here:now – Conceptual model of the impact of an experiential arts program on persons with dementia and their care partners

Abstract

Community-based arts programs for persons with dementia and their care partners hold tremendous potential for increasing cognitive, social, and creative engagement and improving quality of life for these dyads. This is a qualitative, grounded theory analysis of here:now , a joint arts engagement program for persons with dementia and their care partners that involves gallery tours and art classes. Twenty-one care partners and 13 persons with dementia completed in-depth, semi-structured telephone interviews approximately two weeks following participation in the program. The program was well received by both persons with dementia and care partners as evidenced by high levels of engagement, mindfulness, social connection, and positive interactions. Factors identified as important to the experience included the museum space itself, the facilitation process, and socialization with other participants. Results form the basis for a conceptual model for assessing outcomes of arts programming and highlight the unique position of museums to support persons with dementia and their care partners in the community.

Keywords

Alzheimer caregiver mindfulness museum personhood qualitative

Introduction

Alzheimer's disease and related disorders are associated with decrements in quality of life for both the person with dementia and their care partner (Logsdon, Gibbons, McCurry, & Teri, 2002). With limited medical treatments available it is imperative to address non-medical interventions in optimizing care and supporting mood, cognitive functioning, and social engagement for both persons with dementia and their care partners (Brodaty & Arasaratnam, 2012). Arts-based programs have gained increasing acceptance as a means of providing enhanced socialization as well as improving quality of life for persons with dementia and care partners. For example, in a randomized trial of the TimeSlips™ (TS) creative expression program across 20 nursing homes (10 received TS and 10 were control), residents of the facilities that received TS were more engaged and alert, and resident–staff interactions were more frequent and positive than in control facilities (Basting, 2001; Fritsch et al., 2009).

Museum-based programs catering to persons with dementia have also become increasingly popular, with over 40 such programs across the United States (e.g. The MoMA Alzheimer's Project, 2011; Museums on Call, 2013). Research suggests that there are multiple benefits of a variety of cultural arts programs (Camic, Tishler, & Pearman, 2014; de Medeiros & Basting, 2014; Mittleman & Epstein, 2009), however the specific benefits and most important components of such programs are not well established.

The current study explores the impact of a museum-based experiential arts program, here:now , developed for persons with dementia and their care partners. Qualitative, semi-structured interviews with both persons with dementia and care partner participants provide rich descriptions of their perceptions and experiences of participation in the program, and are incorporated into a conceptual model of the impact of arts programs on persons with dementia and their care partners. Results of this investigation provide important information for the ongoing development, improvement, and evaluation of such programs.

Methods

This is a qualitative evaluation and grounded theory analysis of the experiences and impressions of persons with dementia and care partner dyads who participated in the here:now program at the Frye Art Museum in Seattle, Washington. The University of Washington Institutional Review Board and the Frye Art Museum board of trustees approved this investigation.

Study sample

Participants learned of here:now through materials distributed by the Frye Art Museum; the Alzheimer's Association Western and Central Washington Chapter; Elderwise, an adult day program; and through referrals from local physicians. Potential participants were screened by a Frye staff member via a telephone conversation with the care partner. Screening questions assessed the person with dementia's overall cognitive status, ability to maintain focus for a 90–120 min program, comfort in a group setting, and ability to participate verbally in the group discussion. In addition, all persons with dementia were required to have a care partner to accompany and participate with them. Museum staff then asked each dyad at the time of enrollment if they would like to participate in this research study. Research participation was not required for program participation, but 87.5% of people who registered for the program also agreed to participate in the study.

Demographic questionnaires and consent forms were mailed to participants in advance of the program and were completed and returned prior to the first session. Twenty-one dyads participated in this investigation. As shown in Table 1, the average age of the person with dementia was 76 years (range 60–84), and most (72%) had completed a college degree. Categories for prior experience with the arts (including visual, music, theater, dance, architecture, and graphic art) were broadly classified as “little to no experience” (19%), “moderate experience” (24%), and “extensive” (57%). The majority of care partners were spouses of persons with dementia (52%). Adult children (all daughters), paid care partners, and other family members accounted for the remainder. One African American dyad and one Asian dyad participated, the rest were White.

Table 1.

Demographics, persons with dementia, n = 21.

Age mean (range)	76 (60–84)
Sex (% male)	48%
Education, n (%)
High school	3 (14%)
Post high school	3 (14%)
College graduate	5 (24%)
Post graduate	10 (48%)
Previous art experience, n (%)
Little to none	4 (19%)
Moderate	5 (24%)
Extensive	12 (57%)
Relationship to care partner, n (%)
Spouse	11 (52%)
Adult child	4 (19%)
Paid caregiver	3 (14%)
Other	3 (14%)
Clinical Dementia Rating, n (%)
CDR 0.5	4 (19%)
CDR 1.0	14 (67%)
CDR 2.0	1 (5%)

Care partners completed the Clinical Dementia Rating (CDR) scale (Meuser, 2001; Morris, 1993) in order to provide an estimate of overall cognitive and functional ability. The CDR is a five-point scale assessing six cognitive and functional domains (memory, orientation, judgment and problem solving, community affairs, home and hobbies, and personal care). The mean CDR score for persons with dementia in this investigation was 0.97 (SD = 0.31). This corresponds to an average Mini-mental State Exam (MMSE) score of approximately 21–25/30, consistent with mild or early stage dementia (Perneczky et al., 2006).

Setting and program

The Frye Art Museum (http://www.fryemuseum.org) is a 501(c)(3) private operating foundation. As Seattle's only free art museum, the Frye is dedicated to serving the needs of its immediate neighborhood—particularly adults who have been homeless, the healthcare community, and older adults—through an extensive offering of public programs.

Inspired by Meet Me at MoMA, a program started at The Museum of Modern Art in New York in 2005, the Frye Art Museum established the here:now program in partnership with the Alzheimer's Association Western and Central Washington Chapter and Elderwise, a Seattle nonprofit focused on cultural enrichment for older adults. As with the Meet Me at MoMA program, the Frye program utilized a museum educator trained in working with persons with dementia to guide small groups of persons with dementia and their care partners in discussions and interactions based on current museum exhibitions. here:now began in September 2010, and evolved into two offerings; a monthly discussion-based gallery tour and a six-week class that include a gallery tour and a studio art-making experience. Both programs are ongoing.

Monthly tours are 90-min one-time discussions led by a specially trained museum educator. The tour includes five or six dyads (person with dementia and care partner) viewing three paintings organized around a theme; for example, “family,” or “light,” or “forces of nature.” The tour also includes a breakout session during which the dyads discuss a question posed by the educator. For example, after viewing a late-19th century painting of a seascape with figures, each dyad was asked to privately discuss a favorite place by the water. The dyads were then invited to share their conversation with the group.

Classes are six 120-min sessions taught by a museum educator and teaching artist. Classes begin with a discussion of one or two works in the gallery followed by artmaking in the museum's art studio. The theme introduced in the galleries is linked to the art-making activity, which encourages experimentation with watercolor, clay, or collage. For example, after discussing contemporary sculptures exhibited in the galleries, the class created their own three-dimensional works in clay. Near the end of each art-making session, participants are encouraged to look at each other's work, and the teaching artist gives participants an opportunity to talk about creating the work, and for others to give feedback. Each class also includes a short social time with light refreshments.

All museum educators and teaching artists are trained in Visual Thinking Strategies (VTS) (Housen & Yenawine, 2000; Klugman, Peel, & Beckmann-Mendez, 2011). VTS is a proven method of teaching individuals in the process of observation, and has been used in prior museum programs working with persons with dementia (Klugman et al., 2011). VTS is a technique of engaging viewers in thinking and communicating what they see. This conversation-based approach to teaching art is particularly relevant for stimulating discussion in the here:now program, as it does not rely on short-term memory or any recall of historical information. The process begins with quietly looking at a work of art. The educator then engages participants in a series of open-ended questions such as: “What is going on in this picture?”, “What do you see that makes you say that?”, and “What more can we find?” The educator encourages multi-sensory engagement by asking such questions as: “If you were inside this work of art, what would you smell?”, “what would you hear?”, and “what title would you give this work?” Along with asking questions, the educator paraphrases answers, affirms participation, and uses body language to engage participants by pointing to what is being discussed in a work. Participants' comments are linked throughout the discussion, building a conversation and stimulating engagement of all members of the group.

Data collection

Dyads participated in one or more of seven gallery tours and three art-making classes of six sessions each, offered between March 2012 and February 2013. An experienced interviewer who was not otherwise connected to the program conducted qualitative semi-structured telephone interviews with both persons with dementia and care partner participants following their involvement in either the gallery tours, the art-making classes, or both. The purpose of these interviews was to obtain descriptions and perceptions of their participation in the program, in order to inform a conceptual model to identify the most important outcomes, processes, and components of the program (see Appendix for questions). All 21 care partners completed these interviews, and 13 persons with dementia completed the interviews and were included in the coding and data analysis. The remaining persons with dementia had difficulty completing the interviews due to verbal communication difficulties and/or difficulty communicating over the telephone. An interview with a person with dementia was not considered for analysis if the interviewer, or coders, judged that the person with dementia had significant difficulty comprehending or responding to the questions. Interviews were digitally recorded and transcribed verbatim, then coded by project investigators using Atlas.ti software (ATLAS.ti GmbH Germany).

Data analysis

Since little is known about the perceptions of persons with dementia and care partners in regard to the benefits and most important components of arts programs such as here:now , grounded theory was the approach selected to analyze the interview data. Grounded theory is a systematic method of theory development based on collection and analysis of data. Data are obtained without a preconceived hypothesis or theory. Data are coded, analyzed, and re-analyzed, using an iterative process to develop and adjust the theory as more data become available.

Our approach to utilizing grounded theory involved three levels of coding: open, axial, and selective (Creswell, 2007; Strauss & Corbin, 1998). Open coding entails categorizing data into broad categories or themes. Axial coding involves characterizing the properties of categories and establishing relationships between themes. Selective coding then organizes the categories into a framework that can help conceptualize the process being studied (Given, 2008). Grounded theory was used for this study as it was felt to be the most appropriate method for obtaining and understanding the arts experience from the perspectives of persons with dementia and care partners. Two researchers coded each transcribed interview, using clearly defined codes that were developed for consistency. Quotes were often assigned multiple codes, based on their content. Coded text was then analyzed to identify, understand, and characterize themes that emerged in the interviews. Themes were consolidated or expanded in an iterative process throughout the study, and these were used to develop a conceptual model to illustrate their relationships.

Results

Themes

Transcription analysis in open coding revealed a rich source of information from both care partners and persons with dementia, and good content saturation was reached by the end of the study. As expected, persons with dementia had more difficulty verbalizing thoughts and remembering details about the program, but many were able to provide insights about their participation, and the content of their interviews provided meaningful information about their experiences.

Themes overlapped and were not mutually exclusive. Major themes were: facilitation, engagement, mindfulness, enjoyment, socialization, joint respite, personhood, relationship normalizing, relationship affirming, relationship growth, and personal growth. Table 2 lists these major themes and provides illustrative quotations from the persons with dementia and care partners.

Table 2.

Themes and examples.

Themes	Example
Facilitation	Care partner “…she loves the looking. One of the things she mentioned a number of times is how important it is, the silence at the beginning, where they really get a chance to look. And I think that for people with … slow processing skills, not poor but slow, that element is just so important.”
Engagement	Person with dementia “I really hadn't said anything (about a painting). I was really listening to the comments made about it. Then I had wanted to draw the group's attention to something about it.” Care partner “I think it drew him out more than it drew me out. And why that is, I don't know.”
Mindfulness	Care partner “When we paint we just paint. We paint, we talk, we chat. There are no questions and answers. I don't check her out to see how much she's remembered or not remembered.” Person with dementia “The realities of the rest of the world kind of fade away, when you're really uh, drawn into the … what you are seeing in front of you and really looking closely at it.” Care partner “As they say, people with dementia, you know, really live in the moment and enjoy what they can … take what they can from the moment.”
Enjoyment	Person with dementia “And I guess I can't say it too many times, that I really enjoyed myself and I've enjoyed myself afterwards. So that's … I think that speaks highly of you.” Person with dementia “I felt … I felt lighter. I felt happier. You know, with my position, which is sometimes kind o' down.” Person with dementia “I really enjoy being with people and … and with art. And so the combination was perfect.” Person with dementia “I enjoyed it a lot. And just being around with the other people and having my wife with me … that was a lot of fun. I actually enjoyed it a lot.”
Socialization	Person with dementia “I really enjoyed participating in here:now and especially the interactions between the other participants and myself, and also the, uh, people leading the sessions. I really felt there were some uh, important changes in how I looked at things and also really good relationships developed with … the people that were there. It was like a little circle of friends.”
Joint Respite	Care partner “You talk about respite, but respite is always kind of one going someplace and the other going … as partners, going different directions. And this is kind of a respite for both of us together…that allows us not to think about what we are dealing with, but focus on something that is pretty pleasant—all of that are and what we feel about art. There is no immediate need to deal with the disease you know.” Person with dementia “I wish we could … I wish we could, in some ways, do it again, cuz that was just … as what I call it, ‘off the hook’. That was great.”
Personhood	Person with dementia “But this is…this is art. This is who we are. You know? And its rich and … and … people with Alzheimer's having that. And … you know the feeling that you're … you're part of the whole thing too.” Person with dementia “There is not really a right answer. And that's very nice because I find it exhilarating to be able to be what I used to be.”
Relationship normalizing	Care partner “It was almost like we were just equal in the class and so therefore, our interaction, I think, was … it was nicer. It was more like we used to be, kind of.” Person with dementia “Being married to her and then to have a place where we could go, with all the other people, to just being able to just look at all the different things. And it was really good. I just enjoyed it.” Person with dementia “I was just so glad to be there with her.”
Relationship affirming	Care partner “Mom's experience is her experience and I can't make her younger. I can't make her have less dementia … that not my job really. It's just to be with her and love her. (The program) gave me permission to do just that.” Care partner “She actually did ask me some specific questions, which … it did surprise me. Especially when she asked me, ‘Well, do you feel you are creative?’”
Relationship growth	Care partner “It was just interesting that we saw different things and that was just kind o' cool, yeah.” Person with dementia “Well, as (my husband) and I shared the experiences, we … we liked this and we liked that … and I learned about it from him and he learned it from me.” Care partner “I learned more about her … how much she really enjoys art.”
Personal growth	Care partner “It has given us (me, and also my wife) but particularly me, some chance to experience art in a different way.” Care partner “Where you sit and talk about it and try to find something in it, has led me to look at art in a little more of an inquisitive manner and trying to figure out what the artist was doing and why did he do that and did it work and did it not work?” Person with dementia “I think it'll be interesting to find other things that might be of interest to me, as well.”

The theme of “Facilitation” was defined as the specific contributions of the educator and the museum environment to the participants' overall experience. Both care partners and persons with dementia noted the importance of the educator who led the program, and indicated that the skill of the educator contributed to their participation and comfort with the here:now program. Reflective time, as well as the educator paraphrasing and repeating comments from participants, was identified as very useful. The physical museum space was also identified as a special place, in which participants were more easily engaged and focused on the art. Low noise level, smaller groups, and lack of crowds or distraction also contributed to the experience.

“Engagement” was defined as the participant's personal or emotional response to the program, including communication with the educator, the process and structure of the program (looking at art, artmaking), and feeling connected with one's partner in the program as well as other members of the group. For example, one person with dementia reported, “I really enjoyed participating in the…the here:now and … and especially, uh, just the interaction between the other participants and myself. And also the … the people who were leading the sessions. It was really important to me. I … I really enjoy being with people and… and with art. And so, the combination was perfect.” A care partner commented, “There were ways in which it was very inspirational to be with a group of people who, you know, have … are looking for opportunities to enrich, you know, their lives at this time, when there are so many losses.”

“Mindfulness” was a theme that was not only common but had significant penetrance into the entire experience. Mindfulness was defined as “bringing one's complete attention to the present experience on a moment-to-moment basis” (Marlatt & Kristeller, 1999, p. 68), which is similar to the more formal definition, by Jon Kabat-Zinn (1994), “Paying attention in a particular way; on purpose, in the present moment, and non-judgmentally” (p. 4). A quote from a participant with dementia illustrates mindfulness: “The realities of the rest of the world kind of fade away, when you're really uh, drawn into the … what you're seeing in front of you and really looking closely at it.” This ‘in the moment’ experience was seen as very pleasurable and was frequently explicitly tied to the current process of the experience by both care partner and person with dementia. Mindfulness was a broad overlapping theme encompassing other major themes of enjoyment, socialization, joint respite, and personhood.

“Enjoyment” was frequently mentioned. The program was almost universally described as pleasurable or fun. For example, one person with dementia noted, “And I would raise my hand and, you know, give my little idea. And he would … he'd too, but it was really … it was fun! It was fun to do it together.”

“Socialization” was very important to the experience, as noted by comments requesting programmed social time in the tours, and some spontaneous social activity after tours. A care partner commented on the role of the art activity itself to facilitating social interactions, “My husband is more of an introvert and those casual social relations where he has to connect with people are pretty challenging for him. It was very helpful to have the … to have the time together focused on an activity, so it didn't … you know, it wasn't a matter of generating social interaction, but it came more naturally.”

“Joint respite” was defined as a break from the current dyad relationship as it related to daily issues regarding dementia. It is important to note that this was described as a change in focus of the relationship as opposed to simply a break from the current relationship, as is most commonly considered with care partner respite. As one care partner commented: “It was a nice experience. And it was a calming time to be together. It wasn't just doctors' appointments. There wasn't any stress to it and we weren't in a hurry. It was very nice in that way.”

The definition of the theme of “Personhood” was borrowed from Kitwood (1997): “Personhood is a standing or status that is bestowed upon one human being, by others, in the context of relationships and social being. It implies recognition, respect, and trust” (p. 8). Personhood was noted most often as a sense of dignity and wholeness that the person with dementia experienced or expressed during the program. In the words of a person with dementia, “This is who we are. You know? And it's rich and … and people with Alzheimer's having that. And… you know the feeling that you're … you're part of the whole thing too.” Another person with dementia commented, “I find it exhilarating to be able to be what I used to be.”

Relationship themes included normalization, affirmation, and growth. “Relationship normalization” can be seen in the following quote from a care partner: “The collage (activity) at the end was a great collaboration in the sense where we … she would tell me where she wanted to put things and I would put them, or she would put them on herself. So it was cool.” “Relationship affirmation” was distinguished from relationship normalization as confirming current bonds versus removing the stigma that dementia has had on the dyad relationship. As one care partner remarked, “I can't make her have less dementia … that's not my job, really. It's just to be with her and love her. (The program) gave me permission to do just that.” “Relationship growth” was defined as growing together in an either new or repeated but meaningful experience, exemplified by a person with dementia who remarked, “… I learned about it from him and he learned it from me,” and a care partner who said, “I learned more about her … how much she really enjoys art.”

Finally, both care partners and persons with dementia noted personal growth, consisting of discovery of new experiences, personal exploration, and/or expression. For example, one person with dementia noted: “I think it'll be interesting to find other things that might be of interest to me, as well.” A care partner remarked, “It has given us (me, and also my wife) but particularly me, some chance to experience art in a different way.”

Conceptual model

A conceptual model of the participant experience was developed and refined during and after the study period (Figure 1). This model follows the Donabedian (1966) format of structure, process, and outcomes with antecedent participant characteristics added as these were felt to be important to the outcome (Coyle & Battles, 1999).

Figure 1.

Frye Art Museum here:now conceptual model.

Antecedents

Previous art experience may have influenced the initial decision to participate and contributed to the subsequent level of engagement of the participants in the program. Most participants felt comfortable in a museum setting and frequently some participants felt nostalgic about being in a museum together.

The current state of the relationship, namely comfort or acceptance with another's cognitive difficulties related to their dementia, impacted the facilitation of mindfulness. On rare occasions, frank frustration with limitations of the person with dementia was expressed by the care partner, which we viewed as a barrier to engagement of the dyad in the program.

The degree of cognitive impairment had an impact, as expected, on verbalization and participation in discussion during art viewing. As a care partner noted regarding the tour, “I tried to get him to talk about the pieces, but he just thought it was a … it was strange and wasn't understanding what was going on and didn't want to be there because it was something that was kind of unexpected of him, not knowing what was going on. He just knew we were going to see some art pieces.” Persons with dementia who appeared to have greater language difficulties participated more during hands-on art classes than in the art viewing experience. This was one of the main limitations identified with the tour, as contrasted with the classes.

Structural factors

Structural factors included both the museum ambiance and general facility amenities. Easy and free parking was often noted as very important as was location of the museum and timing of program in the early afternoon. The museum space, both gallery and art studio were noted to be special areas facilitating engagement. As one care partner put it, “Just being in a museum where you're surrounded by art has an impact in and of itself.” Persons with dementia also noted the impact of a “special place”. One person with dementia commented, “I think that sometimes when I am in a museum, I’m just kind of in another world but this was kind of ‘Oh wait, there is reality here too.’” Another person with dementia noted, “It's nice to go to a place like that and we can uh, and feel … and kind of quiet.”

The museum educator's use of VTS in facilitating the gallery discussions significantly enhanced participation. The silent time that began each discussion provided the opportunity for participants to sit quietly in front of the artwork without feeling rushed or pressured to quickly respond. Initiating the discussion with questions, the museum educator encouraged an active process of discovery and put participants at ease by reminding them there were no wrong answers. A safe and supportive environment was created where all participants become valued contributors and their comments were acknowledged. It was generally noted as a very positive environment. A care partner commented, “There's no wrong answers and she could always find something … in what we were doing that was positive, you know. So that was marvelous.”

Process

Mindfulness incorporates the themes of enjoyment, socialization, joint respite, and personhood, as these themes frequently overlapped. In the proposed conceptual model, this “bundle” comprised the process of the program. The participants considered process as the essence of the program experience. It is this “ here:now ”, or “being in the moment” of the experience, that not only carried the most value for participants, but also was the most emotional component of the program.

Outcomes

Outcomes were divided into relationship and personal effects. Relationship effects included themes of growth, affirmation, and normalization, and were strongest within the dyads but also seen among unrelated participants. These relationships also extended into other community programs such as local Alzheimer's Association programs and adult day programs, where participants had opportunities to socialize with fellow participants they had met at the here:now program.

Personal effects included themes of personhood and personal growth. Preservation of personhood was particularly distinguished as a more lasting and persistent product of the program and it carried over after the program ended.

Although the current investigation did not attempt to directly compare the two types of experiences in the program (gallery tour vs. artmaking), based on comments from the interviews, it appears that participation in the art-making sessions had a greater impact as compared to a single gallery tour experience. Both intensity and frequency of the experience were increased in the art-making class. This was particularly important for socialization. As one person with dementia noted: “There was a heightened sense of togetherness, for having been through the … the one experience and then coming upstairs and going through the hands-on experience.” And from a care partner: “But finally, the very last day, when we were painting up in the studio at the Frye, she started to loosen up a bit and then paint, like nobody was around. I looked back to see she was finally painting and that was huge to me.” There was also chance for further sharing and interaction with other participants in discussing their artistic creations. Hands-on artmaking versus discussion also allowed more personal exploration and expression. These benefits of a longer and more in-depth experience are postulated to enhance both the process and outcomes of experiential arts programs.

Discussion

This investigation represents an important and unique attempt to explore the components and specific effects of an art museum program from the perspectives of persons with dementia and their care partners. Since there is scarce literature in this area (Beard, 2012) and a lack of subjective accounts in arts intervention programs for persons with dementia (Downs, 2000), the use of qualitative methods through interviews and grounded theory analysis was important in achieving this goal. It was particularly important to hear the voice and perspective of the person with dementia during the interviews when evaluating the personal impact of the program. This adds to current quantitative findings in arts intervention programs (Camic et al., 2014; Mittleman & Epstein, 2009).

The proposed conceptual model of the museum program was developed to better understand inputs, processes, and outcomes of the program. This process of deconstruction of the here:now program will hopefully facilitate adaptions and improvements of programs into different settings and populations. As noted by de Medeiros and Basting (2014), it is important to understand components of arts interventions. In particular, they stress the importance of understanding the essence of the intervention (as opposed to the artistic discipline), how the intervention is delivered, and the characteristics of the participants—the what, how, and who of arts-based interventions. We have attempted to begin to address each of these components in our conceptual model.

Art intervention studies most commonly assess quantitative outcomes, such as measures of cognition, depression, or anxiety (Beard, 2012). Although outcome measures are certainly important (and are not mutually exclusive of process), process should not be underestimated as valuable in and of itself. As noted by our findings, process was highly valued by our participants. Our findings of enjoyment, socialization, joint respite, and personhood were considered by both care partners and persons with dementia as the main benefits of the program. Enjoyment is a recurrent theme in other arts engagement programs (Killick & Allan 1999), and is likely among the main factors in the popularity and proliferation of arts-based programs for people living with dementia.

Socialization and meeting others who share common concerns have also been noted to be among the most important benefits of other early stage programs for people with dementia (Logsdon, McCurry, & Teri, 2006), and this program was no exception. Both persons with dementia and care partners identified socialization as a significant component of the program in both the class and tour. Participants suggested increasing the amount of time allotted to socialize in the program, and some reported engaging in informal socializing with other participants in the museum café after the tour or at other events and venues that they attended. Also of note, participants recommended a maximum of 90 min for the tour and 120 min for the art-making class to minimize fatigue.

The benefits of the here:now program in supporting personhood for persons with dementia and the dyad relationship (affirmation and normalization) were strong findings in our study. This lends credence to the importance of programs such as here:now in augmenting the usual medical and supportive care for persons with dementia by focusing on higher needs such as belonging, self-esteem, and recognition. As noted by Schölzel-Dorenbos, Meeuwsen, and Olde Rikkert (2010), the focus of caring for basic needs is typical, particularly as dementia progresses, with social, emotional, and existential needs frequently unmet. The importance of assessing and addressing these higher needs should not be overlooked and these outcomes are, in and of themselves, important targets for dementia intervention.

As with all empirical investigations, our study had several limitations. Participants were self-selected and had a high degree of previous art experience as well as higher level of education, which may limit extrapolation of findings to a more diverse population. There was no randomization or direct comparison between tours and classes therefore we were not able to directly compare dose response to the program or the specific effect of hands on artmaking.

Phone interviews were used rather than in-person interviews; this may have limited elucidation of feedback. We were unable to determine if lack of ability of some of our persons with dementia participants to engage in telephone interviews was due to poor baseline verbal ability or difficulty with communication via telephone. Since this was a community-based program, medical chart reviews were not obtained and type and severity of dementia was not formally assessed. Participants were interviewed within two weeks of completing the program, rather than immediately after the program. This timeframe was chosen due to logistical issues as well as concern for causing fatigue as noted with previous studies (Mittleman & Epstein, 2009). Although this delay may have affected participant's assessment of the immediate impact of the program, there was also concern about maintaining separation between the museum experience and the study process. We believe a delay in the interview provided this separation.

Despite its limitations, this investigation suggests many areas of consideration for future research. Effectiveness of this and other arts programs for various levels of dementia need to be considered. Additionally strategies for adaptation within programs to accommodate progression of cognitive impairment should be examined. Dose of intervention needs to be assessed, as it likely has an influence on program effectiveness, particularly considering aspects of socialization.

Different types of visual art, such as representational, abstract, or conceptual, may impact program effectiveness. The present study primarily used traditional/representational visual art. It is possible that participants who are not regular consumers of visual arts would be less apt to connect with more conceptual art, although abstract art may be acceptable (MacPherson, Bird, Anderson, Davis, & Blair, 2009). For hands-on art intervention, the current program used clay, collage, and watercolor. Different media may be more effective for different persons, dementia disease types, or stages of cognitive impairment.

Further evaluation should be conducted on the effects of art-based interventions on life meaning, legacy, as well as anticipated bereavement. As noted by Pinquart and Forstmeier (2011), reminiscence is an essential part of self-acceptance and psychological health, with positive effects on ego integrity. Older adults visiting galleries and participating in facilitated art discussion have been observed to engage in reminiscence that, in turn, increased social connectedness (Goulding, 2013). Within the here:now program, participants often reflected on past experiences, and preservation of personhood and relationship affirmation outcomes can be seen as supportive of or consistent with ego integrity.

Funding for arts-based interventions has been traditionally limited, in part, due to lack of objective outcome measures. Currently, participants in here:now do not have the opportunity to repeat or continue the art-making class due to high demand for the program; participants are able to return once a month for gallery tours because the program has been expanded as a result of funding. More formal quantitative assessments would help validate the benefits of art-based programs for persons with dementia and care partners and potentially improve funding sources. These assessments should include the impact of programs on quality of life, mood, communication, social engagement, and other salient outcomes.

Conclusions

Results of this investigation contribute to our understanding of how a tailored museum program can benefit persons with dementia and their care partners. The popularity and growth of art museum programs for persons with dementia speaks to the increasing demand for outlets for enjoyment, socialization, and respite. However as noted by our participants, such programs may also have deeper personal and relationship benefits.

Museums are an essential core of a community. Within our current setting of limited medical treatment for dementias, community resources need to be leveraged to support and improve the lives of persons with dementia, care partners, families, and the larger community as a whole. Understanding the personal and interpersonal impact of arts engagement programs is important in understanding our cultural response to dementia, and more research on art museum programs is needed to address how best to serve a more varied population of persons with dementia. We also need to better understand personal and relationship characteristics that may have an impact on the experience. Greater understanding of the benefits of visual arts programs will facilitate the advancement of such programs to benefit this vulnerable and growing segment of our population.

As an astute care partner commented: “And …. I mean, I just can't imagine how many people are in the same situation … so I'm just really glad people are taking, you know, the chance and creating programs and stuff for … especially for caregivers and the persons with dementia. We're not configured for it, either culturally or logistically. It's gonna hit us with a bang, I'm afraid.”

Footnotes

Acknowledgment

The authors would like to thank the staff of the Alzheimer's Association Western and Central Washington Chapter, Elderwise, and Frye Art Museum. Special thanks to Lois Giles for assistance in transcriptions; Katherine Lamar, Master's Candidate 2015, Museology, University of Washington, for comments on the manuscript; Jill Rullkoetter, Senior Deputy Director, for institutional support at the Frye Art Museum; and Elizabeth Vig MD, MPH for conceptual review of the project.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was supported by departmental funding from the University of Washington School of Medicine, Division of Gerontology and Geriatric Medicine, with additional support by the Frye Foundation.

Lee Burnside, MD, MBA, is Clinical Assistant Professor in the Department of Medicine, Division of Geriatrics and Gerontology at the University of Washington. He is a geriatrician and palliative care specialist with an interest in maintaining and improving quality of life through stages of dementia.

Mary Jane Knecht is Manager of Creative Aging Programs at the Frye Art Museum (Seattle, WA). Recognizing the dramatic increase of Alzheimer’s disease and the growing older adult population living in the retirement communities that surround the Frye Art Museum, Knecht explored the idea of offering an arts engagement program for persons with dementia and their care partners, and was instrumental in starting the Frye Museum's here:now program.

Elizabeth Hopley, BA, is a study coordinator in the Department of Medicine, Division of Gerontology and Geriatric Medicine and the Department of Medical History and Ethics at the University of Washington.

Rebecca G Logsdon, PhD, is Research Professor of Psychosocial & Community Health in the University of Washington, School of Nursing, and holds an adjunct position in Psychiatry and Behavioral Sciences in the University of Washington’s School of Medicine. She is a clinical psychologist and fellow of the Gerontological Society of America, and has worked with older adults with memory loss and their families for over 30 years. Dr Logsdon’s research focuses psychosocial interventions to improve quality of life for individuals with memory loss and their families.

Appendix

References

Basting

A. D.

(2001) ‘God is a talking horse’: Dementia and the performance of self. The Drama Review 45: 78–94. DOI: 10.1162/10542040152587123.

Beard

R. L.

(2012) Art therapies and dementia care: A systematic review. Dementia 11: 633–656. DOI: 10.1177/1471301211421090.

Brodaty

Arasaratnam

(2012) Meta-analysis of nonpharmacological interventions for neuropsychiatric symptoms of dementia. American Journal of Psychiatry 169: 946–953. DOI: 10.1176/appi.ajp.2012.11101529.

Camic

P. M.

Tishler

Pearman

C. H.

(2014) Viewing and making art together: A multi-session art-gallery-based intervention for people with dementia and their carers. Aging and Mental Health 18: 161–168. DOI: 10.1080/13607863.2013.818101.

Coyle

Y. M.

Battles

J. M.

(1999) Using antecedents of medical care to develop valid quality of care measures. International Journal for Quality in Health Care 11: 5–12. DOI: 10.1093/intqhc/11.1.5.

Creswell

(2007) qualitative inquiry and research design, 2nd ed. Thousand Oaks, CA: Sage.

de Medeiros

Basting

(2014) ‘Shall I compare thee to a dose of donepezil?’: Cultural arts interventions in dementia care research. The Gerontologist 54: 344–353. DOI: 10.1093/geront/gnt055.

Donabedian

(1966) Evaluating the quality of medical care. The Milbank Quarterly 44: 166–206.

Downs

(2000) Dementia in a socio-cultural context: An idea who's time has come. Ageing and Society 20: 369–375.

10.

Fritsch

Kwak

Grant

Lang

Montgomery

R. R.

Basting

A. D.

(2009) Impact of TimeSlips, a creative expression intervention program, on nursing home residents with dementia and their cargivers. The Gerontologist 49: 117–127. DOI: 10.1093/geront/gnp008.

11.

Frye Art Museum. here:now -Arts Engagement for individuals living with dementia. Retrieved from http://www.fryemuseum.org/program/here_now.

12.

Given

L. M.

(2008) The SAGE encyclopedia of qualitative research methods, Volume 2, Thousand Oaks, CA: Sage Publications.

13.

Goulding

(2013) How can contemporary art contribute toward the development of social and cultural capital for people aged 64 and older. The Gerontologist 53: 1009–1019. DOI: 10.1093/geront/gns144.

14.

Housen

Yenawine

(2000) VTS Basic Manual: Learning to think and communicate through art, New York, NY: Visual Understanding in Education.

15.

Kabat-Zinn

(1994) Wherever you go, there you are: Mindfulness meditation in everyday life, New York, NY: Hyperion Books.

16.

Killick

Allan

(1999) The arts in dementia care: tapping a rich resource. Journal of Dementia Care 7: 22–24.

17.

Kitwood

(1997) Dementia reconsidered: The person comes first, Buckingham: Open University Press.

18.

Klugman

C. M.

Peel

Beckmann-Mendez

(2011) Art rounds: Teaching interprofessional students visual thinking strategies at one school. Academic Medicine 86: 1266–1271. DOI: 10.1097/ACM.0b013e31822c1427.

19.

Logsdon

R. G.

Gibbons

L. E.

McCurry

S. M.

Teri

(2002) Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine 64: 510–519. DOI: 0033-3174/02/6403-0510.

20.

Logsdon

R. G.

McCurry

S. M.

Teri

(2006) Time-limited support groups for individuals with early stage dementia and their care partners: Preliminary outcomes from a controlled clinical trial. Clinical Gerontologist 30: 5–19. DOI: 10.1300/J018v30n02_02.

21.

MacPherson

Bird

Anderson

Davis

Blair

(2010) An art gallery access programme for people with dementia: ‘You do it for the moment’. Aging and Mental Health 13: 744–752. DOI: 10.1080/13607860902918207.

22.

Marlatt

G. A.

Kristeller

L. L.

(1999) Mindfulness and meditation. In: Miller

W. R.

(eds) Integrating spirituality into treatment, Washington, DC: American Psychological Association, pp. 67–84.

23.

Meuser, T. (2001). Clinical Dementia Rating (CDR) Scale. Alzheimers’s Disease Research Center Washington University, St. Louis. Retrieved from http://www.alzheimer.wustl.edu/cdr/pdfs/cdr_overviewtranscript-revised.pdf.

24.

Mittleman, M., & Epstein, C. (2009). Meet me at MoMA Program. Retrieved from http://www.moma.org/docs/meetme/Resources_NYU_Evaluation.pdf.

25.

The MoMA Alzheimer's Project: Making Art Accessible to People with Dementia. (2011). Retrieved from http://www.moma.org/meetme/resources/index#audiencefocus.

26.

Morris

J. C.

(1993) The Clinical Dementia Rating (CDR): Current version and scoring rules. Neurology 43: 2412–2414. DOI: org/10.1212/wnl.43.11.2412-a.

27.

Museums on Call. (2013). How museums are addressing health issues. American Alliance of Museums. Retrieved from http://www.aam-us.org/docs/default-source/advocacy/museums-on-call.pdf?sfvtsn=8.

28.

Perneczky

Wagenpfeil

Kommosa

Grimmer

Diehl

Kurz

(2006) Mapping scores onto stages: Mini-mental state examination and clinical dementia rating. American Journal of Geriatric Psychiatry 14: 139–144. DOI: 10.1097/01.JGP.0000192478.82189.a8.

29.

Pinquart

Forstmeier

(2011) Effects of reminiscence interventions on psychosocial outcomes: A meta-analysis. Aging and Mental Health 16: 541–558. DOI: org/10.1080/13607863.2011.651434.

30.

Schölzel-Dorenbos

C. J. M.

Meeuwsen

E. J.

Olde Rikkert

M. G. M.

(2010) Integrating unmet needs into dementia health-related quality of life research and care: Introduction of the hierarchy model of needs in dementia. Aging & Mental Health 14: 113–119. DOI: 10.1080/13607860903046495.

31.

Strauss

Corbin

(1998) Basics of qualitative research, 2nd ed. Thousand Oaks, CA: Sage Publications.