Building creative communities of care: Arts,dementia,and hope in the United States

The arts, cultural community development, and dementia care

Although they are rarely explicitly mentioned in age- or dementia-friendly frameworks, the arts have and are continuing to emerge as a powerful tool to foster these transformational efforts. These include a wide range of efforts with a variety of applications and goals. Some programs are framed as clinical “interventions,” and seek to improve cognitive function or other health outcomes. Some arts programs share the voices and images of people with dementia to counter dominant narratives that dementia is only and always a tragic emptying of self. Research on social isolation and its impact on health (Holt-Lunstad, Smith, Baker, Harris, & Stephenson, 2015) has coincided with an expansion of arts-based programming focused on building relationships between care partners and their broader communities. These arts programs are coming from multiple sectors, from art therapists working within the biomedical frame; artists seeking to expand their work by collaborating with the health sector; and arts and culture organizations seeking to open their doors to the growing aging population in their communities. There is one area of the arts that holds tremendous promise for people living with dementia, and that has been the root of my own practice as an artist—cultural community development.

The use of the arts to foster community development has a long, vigorous history in the United States, spanning back to the early 1900s with pageants, community choirs, and rural writing groups to name a few (Gard Ewell, 2011). Its formalization into a field of study in the United States might be traced to the growing influence of Augusto Boal’s Theatre of the Oppressed (1979), which uses theatre techniques to catalyze social change and cultural transformation. Built on the ideas of educator Paolo Freire (1970), Boal’s techniques were first born out in Brazil and Europe, and began to influence North American artists and community activists in the late 1970s. Don Adam and Arlene Goldbard’s The Creative Community: The Art of Cultural Development (2001) helped drive the formation of the field in the United States. The work of cultural development frames art-making as a democratizing tool—to invigorate citizenship and individual and community capacity by facilitating personal expression and shared communal vision. Americans for the Arts, a 50-year-old, major advocacy organization for the arts in the United States, formed a division called Animating Democracy in 1999, which further supported the development of this field through publications, conferences, and funding (see for example, Korza, Bacon, & Assaf, 2005; Korza, Bacon, & Animating Democracy, 2005).

As an artist and scholar of Theatre Studies, arts and cultural development is my bailiwick. I attended a training workshop that Boal held at the Pedagogy of the Oppressed Conference in 1997. I worked in ensembles with actors and non-actors to create original, inter-active performances that engaged the audience and encouraged them to rethink their own social performance. At the same time, I was deepening my focus on working with older adults, particularly people with cognitive disabilities like dementia. I noticed that the vibrant field of arts and cultural development and the enormous healthcare sector seemed to repel each other like magnets of the same pole. Why?

I now see several possibilities for the slow connection between the fields of cultural community development work and aging/dementia care. First, the bio-medical frame of healthcare, that can be traced to the institutionalization of medicine in the 19th century (Foucault, 1975), can be so consuming that people who enter it suspend their “citizenship” while they are in its care. The powers of culture-making to connect people to their own voices and link them in meaningful ways to their communities are subsumed to the rhythms and logic of the medical institution itself. In such a world, any mechanism for culture- or meaning-making that enters the door of the medical institution is transformed into “therapy.” Plants become horticulture therapy. Natural light becomes phototherapy. Animals become pet therapy. Art making (dance, poetry, storytelling, visual arts) become creative arts therapy, facilitated by trained therapists and reimbursed/paid for only if they improve a given health condition. Because nursing homes were built on the model of hospitals (Ballenger, 2010), they bear the residue of this suspension of citizenship, even though it is not uncommon for residents to live in care settings like this for five to 10 years if not longer.

Second, it is possible that the stigma of aging and disability repel community-engaged artists from working in these environments and from perceiving them as part of their larger community networks to be mobilized. Stigma breeds low expectations, and artists might assume that people with dementia are not capable of being a source of expressive transformation. The tools community-engaged artists use (such as Boal & Jackson, 2002 and Rohd, 1998) need both conceptual and practical adaptation when applying them to people living with dementia. Such artists commonly focus on helping people to “tell their own story,” and dementia can make this challenging. Many exercises in books inspired by Boal’s work begin with directing participants to “walk around the room and explore the space.” I once read an entire book of these exercises eager to find some I could use in my work with people with dementia. I found complex sequences of thought development and an emphasis on physical activity that precluded the participation of people with cognitive and physical disabilities.

In recent years, scholars and practitioners in the field of dementia care/studies have made arguments for reasserting the “social citizenship” of people with dementia—which is offering promise for bringing the strengths of these two fields, cultural community development (built on animating citizenship) and dementia care together (Bartlett & O’Connor, 2007; Barlett, O’Connor, & Mann, 2010; Clarke & Bailey, 2016; Phinney et al., 2016). A merger of these two fields can be seen in Dupuis, Kontos, Mitchell, Jonas-Simpson, & Gray (2016), which relays a Canadian, community-based performance project that brought together people with dementia, their families, and care partners to create counter narratives to too-common tales of tragedy. But what of the United States? When I first encountered Mike White’s influential Arts Development in Community Health: A Social Tonic (2009), which both chronicles and theorizes arts and community health projects, I was hungry to find examples in my own country. But in the opening chapter he simply writes that the healthcare system in the United States has hamstrung this work to such an extent that he found no examples to share.

The Penelope Project and the development of creative communities of care

In 2009 I started my own work to bring together the worlds of cultural community development and dementia care, with The Penelope Project (Rose, Towey, & Basting, 2016). This was a two-year effort to retell the story of the Odyssey from the perspective of Penelope, the hero who never left home. A professional theater company (Sojourn), university students (led by myself and colleague Robin Mello), and the residents, participants, staff and family of an entire continuing care retirement community collaborated to create an original, professionally produced play that we staged site-specifically in the care home for an outside, paying audience.

To inform the work before the project officially launched, I held a gathering of thought leaders from the field of community-engaged arts practice and the fields of aging and disability services. Attendees included Arlene Goldbard (writer) and Amy Horst (a community arts-focused museum curator) along with nationally recognized artists who brought their expertise in cultural community development and site-specific and interactive art making. Only one of these artists had ever worked in aging or long-term care in any way. From the aging and disability sector, attendees represented major culture-change, caregiving, and aging services membership organizations, including PHI, Leading Age (then called the American Association for Homes and Services for the Aging), Family Caregiving Alliance, National Center on Senior Transportation, and the National Center for Creative Aging to name a few (Basting, 2009). We called the Think Tank “How to Radically Transform Activities in Long-Term Care.” The cross fertilization of perspectives from attendees yielded several important concepts. The group identified elements of “meaningfulness” that could be used to transform activities from “busywork” into something that would capture the interest and honor the capacities of both elders and their care partners. These elements have been echoed in research as well (Feldman & Snyder, 2005; Frankl, 1997; Stillman et al., 2009). According to attendees, meaningful programming should:

foster individual expression;

After the Think Tank, Goldbard emailed additional thoughts triggered by the rich conversations. One of them I found particularly striking, and touched on the impact of hyper-medicalization of aging; “Instead of treating public issues like private troubles, what’s needed are interventions at every level, to relieve the burden on families and reframe aging as a universal human process, not a medical problem.“ Aging is certainly not synonymous with dementia. But for people 85 and over, the numbers (hovering around 50%) make it nearly “normal.” The process of stigmatizing dementia, separating out people touched by its symptoms from their larger communities and bracketing their citizenship, can be disrupted by asserting this “normality” of experiences of cognitive or physical frailty.

Goldbard’s statement is linked to meaningfulness characteristic #2—“to have a greater sense of social consciousness; be part of something bigger.” Too many care settings are insular in their focus—making seemingly noble attempts to “be world” for their residents, providing for and meeting all medical, spiritual, psychological, and social needs rather than partner with the broader community in meaningful ways. Less nobly perhaps, an institution might also prefer to be a closed system to maximize what it imagines to be control and efficiency. But closed systems merely foster isolation and fuel stigma and despair—often for staff and families as well as for elders.

Based on my own work in community building through the arts since that Think Tank, I now add element #5: “a rigorous creative process.” By investing resources (time, quality ingredients/supplies, artistic expertise) facilitators can create both a process and product into which participants can invest energy, meaning, and pride. This also increases participants’ social capital when the work is shared with people beyond their immediate community.

The Think Tank, the rich tradition of cultural community development in the US, and the models of community health projects in other countries (White, 2009) guided our steps as my collaborative team began to shape the Penelope Project, and in subsequent community-building efforts since then, including Slightly Bigger Women (Basting & O’Brien, 2017), Islands of Milwaukee (Basting, 2017), The Crossings, the annual Flourish Fest in Milwaukee, and most recently, Beyond Memory, a participatory karaoke animation of stories told by people with dementia. These cultural community development projects share several elements in common that have become a framework for what I have come to call the “Creative Community of Care” (CCC) organizational training program. I will focus on the Penelope Project as an example of a CCC project.

CCC: Complex/open systems

CCC projects are open or complex systems that engage multiple partner organizations and their members as equals. In the language of theatre, the partners become part of an “ensemble” in which all contribute to the articulation of the goals and the successful completion of the project. Families, staff, and volunteers engage as equal partners and explorers, and are not locked solely in the role of entertaining or distracting elders. CCC projects look at the care home as a complex system itself, and seek to engage people of all abilities.

The Penelope Project ensemble was built on a group of “stakeholders,” which at the opening of the project included programming directors for each level of care (skilled nursing, assisted living, independent living and day services); two University of Wisconsin Milwaukee faculty members (myself included); and Sojourn Theatre’s director and designer. Our monthly meetings (by phone and in person when the artists were in residence) acted as focus groups for shaping the structure and content of the project. Early in the project, the group created a partnership agreement that outlined one common goal (”improving the quality of life of all those who live, work and visit Luther Manor), and objectives unique to each partner organization. By commenting on drafts and eventually signing the joint agreement, the group embarked on a project in which we were committed to helping each other achieve those diverse objectives and for which success demanded collaboration. We could not achieve those lofty goals without each other.

Evidence of the project’s success in opening Luther Manor as a system of care came in the final stakeholder meeting, which took place a month after the final performance of the play, two years after the project began. When I arrived in our regular meeting room, it was already overflowing. The staff had taken the liberty of expanding who they considered stakeholders, and invited family members, residents with and without dementia, administrators, and the director of pastoral care.

CCC: Accessible or dementia normal

In CCC projects, all creative activities are designed to be adaptable and accessible to people with physical and cognitive challenges. Families are invited to participate. Staff at all levels are invited to play and explore as equals. It is a “360 degree” approach—normalizing and engaging elders by inviting participation of their full community of care (both internal and external) as peers and fellow citizens. For example, guided by a Classics scholar, we explored the concept of “welcoming the stranger,” a core element of ancient Greek culture. Working with a choreographer, we invited all residents to help us create a “welcome dance.” How would you show a stranger they were welcome to your community? Participants in the day center, the majority of whom have dementia, created a movement piece that eventually became part of the culminating scene of the play in which a chorus playing Penelope welcomes Odysseus home after 20 long years. The scene was played in call and response, with a professional actor signaling the movements, enabling people with dementia to play in the chorus alongside staff, family members, and elders without dementia.

Insisting on accessibility had powerful results for The Penelope Project. The final choral scene was integrated. Project participants from independent living became curious about the responses and artistic output of participants living in more supported areas of the care home. In the play, we rehearsed and performed scenes throughout the care home, including the nursing home and assisted living areas. Outside paying audience members and staff and residents followed the show from scene to scene, with professional-quality production wrapped around each scene whether in the large chapel, the day room in skilled nursing, or the assisted living dining hall. We witnessed the reuniting of friends who used to living near each other in independent living, but who had not seen each other because one had to move to assisted living. Working on a common, meaningful, long-term and professional quality project that insisted that all participants could engage as equals created a space that was dementia normal—in which dementia did not in any way limit one’s ability to make beauty and meaning.

CCC: Immersive

A CCC project does not bracket arts programming solely into “activity” time. Instead, the project is infused into daily relationships and the very air of the place. In the Penelope Project, we created a choral response for anyone to say when they heard the word “Penelope,” which was uttered quite often. Taking an amalgam of adjectives that appear in the Fagles’ translation of The Odyssey to refer to Penelope, the choral response became “Our cunning, noble, wise, and lovely queen.” We designed the phrase as a logo. We printed stationary with the phrase. We printed t-shirts and gave them to residents, family and staff. We printed posters that went on every bulletin board we could find. In interviews after the play was finished, we learned that staff and residents began to greet each other as “Penelope”—responding with “our cunning, noble, wise, and lovely queen.”

In skilled nursing area, residents took a field trip to a nearby lake to experience what it might feel like to wait for a loved one to return over water as Penelope had waited for Odysseus to return to their home on the Island of Ithaca. According to the program director, the group assembled in their wheel chairs by the lake on a warm, fall day and read passages from the Odyssey, much to the awe of other visitors to the park.

This immersion of imagination and play into everyday life infuses the project into the very fabric of community life. Again, this emphasizes that the project is more than an “activity” solely for residents, but rather a shared exploration for the larger community. Over the course of the project, the stakeholder group began to grow. The Volunteer Coordinator joined our meetings. As the staff and administrators began to talk about the project, family members asked how they could participate. In weekly, student-facilitated creative workshops in all levels of care, family members began to show up to participate with elder residents—not as “helpers,” but as participants.

CCC: Identify and build on existing assets and rituals

The CCC model follows asset-based community development approach (Kretzman & McKnight, 1993; McKnight & Block, 2010) which looks for existing strengths in people, places and systems. In Penelope, the artists and university collaborators spent months observing and engaging with the Luther Manor community to understand the rhythms of its days and its operational systems. We noted how laundry, medication, and food were collected and delivered; how and where visitors entered and engaged; the spaces in which people congregated and those they avoided; how news and stories circulated through the environment; what happened when people had to go to the hospital, or when people passed. We identified obvious and hidden talents of residents and staff, and integrated them into both the creative workshops and the play production itself.

In one example, we learned that a resident could play Sentimental Journey on the piano. In the transition from the opening scene, which took place in the lobby of Luther Manor’s Faith and Education Center, professional performers lead audience members into the skilled nursing center’s hallways playing singing Sentimental Journey. As they turned a corner, the actors faded out and Jackie, stationed at an electric keyboard in a side lounge area, continued the song.

In another example, the Executive Director of the care community granted permission for our stage manager to “call the show” (give directions to actors, including residents, staff, and volunteers) on the community’s public address intercom system. “Penelope, you are places in the Faith and Education Center” rang across the p.a. system. 20–30 residents and staff began moving through the hallways to perform in the final choral scene.

Building on existing systems has a double impact. First, it makes it easier for staff to adapt to the infusion of creativity into their environment. Rather than change their patterns, we augmented them, and encouraged staff and residents to see their patterns in a new way. This overlap between real and heightened reality created a blurring effect. When listening to Jackie play Sentimental Journey—was this part of the play? Or real life? Infusing creativity in to the very fabric of the community itself enabled people to see themselves and each other differently—as having potential for meaningfulness.

CCC: Developmental

A CCC project sets itself on a generous schedule (commonly two years) that allows for the exploration of the material to develop over time. After a period of partnership building and cross-training, staff, volunteers, elders, and students began to facilitate creative workshops on a variety of themes drawn from The Odyssey. We sought to understand the characters, their feelings, and motivations. We sought to understand the ancient Greek culture and the language. We documented all creative output from the workshops and shared it in a variety of formats on our way to the ultimate culminating play production. On their own initiative, the staff created a gallery space to showcase the work emerging from the project. Administration gave permission to locate the gallery in an unused independent apartment and “Penelope’s Room” was born. Groups of residents from all areas of the care community visited the room to see the growing number of poems, sculptures, paintings, and stories. The building maintenance team even painted the room with a Mediterranean theme.

At first, staff was somewhat resistant to the idea of a long-term project. In stakeholder meetings, staff wondered about the people who wouldn’t live long enough to participate in the culminating event, and the emotional toll that might have on family. But in the final stakeholder meeting, participants talked about how the project had become a living memorial that contained the contributions of all those who participated over the last year. The durational model echoes a traditional, curricular, semester-based model that encourages learning and growth over time. It made me very aware that most activities in care communities are short-term, if not one-time events, and in so doing are undermining the opportunity for residents to learn, grow, and make something profound that can only come from long-term development.

Given time, the care system itself can begin to absorb improvisation and become more flexible, nurturing creative leadership and collaboration from among elders, family members, volunteers, and staff at all levels. As part of a mixed-method evaluation of the Penelope Project, including pre/post surveys for students, staff and artists, we conducted semi-structured interviews with residents, participants, volunteers, students, family, and staff at all levels. confirmed these guiding principles. One staff member directly addressed the feeling of opening themselves to an improvisational process with less focus on control:

I think that’s a really good thing that we all learned to let go of the control. ‘Cause in the beginning we were like, ‘Where’s the schedule? Who is going to [do] it?’ And then … the last three weeks we were like, ‘Just let me know when I’m supposed to show up!’ [general laughter] And [what] was really remarkable [was] to stand back and watch, that as we let go of the control, the residents and participants participated better. (Rose et al., 2016, p. 147)

CCC: Rigor and cultural value

In the original partnership agreement for Penelope, one of Sojourn Theatre’s objectives was “to create world-class art.” One of Luther Manor’s objectives was to provide top-quality, person-centered care. And the university partners aimed to provide an excellent curricular experience for students. All three partner organizations insisted on high levels of rigor—in care, creative, and educational processes. All three partners applied for and received grants from funding organizations that recognized this striving for excellence—in the arts, in research and education, and in social care. Therapy-oriented arts programs emphasize process over product.

In Penelope, we emphasized the quality of both process and product—framing the product as an authentic collaboration between professional artists and non-artists. By insisting on high expectations and a rigorous process for the project, we were investing in the cultural capital of all participants. This investment helped residents, staff, family and volunteers to trust us, and to feel safe, even proud, to take the risk of creative expression and invest themselves in the project. In one example, when the interviewer asked an elder skilled care resident what she thought of participating in the project, she responded “It is the last important thing I will do in my life.”

The challenges of the CCC model

As our first time through a project in the CCC model, the Penelope Project was a mammoth undertaking that took considerable resources of time, money, and energy. Committing to an ensemble, collaborative approach demands constant communication, which can be challenging for all parties. We found it helpful to identify and use communication avenues, such as weekly meetings already on the schedule that could be expanded to include the project, rather than adding another meeting to already tightly packed days. Pre-existing newsletters and blog posts could add a bullet point or a “Penelope Update.” Learning the system and expanding the capacity of that pre-existing system will help all parties from feeling overwhelmed by the process of creating the project.

Engaging all levels of staff also proved challenging. While we held informational meetings and succeeded in engaging administrators, social workers, programming, and building maintenance staff, we were not as successful in engaging direct care or clinical staff. In subsequent projects, such as the Islands of Milwaukee, in which we infused creative engagement into the Meals on Wheels delivery system, we addressed this by hosting interactive meetings with volunteers, direct care workers, and their supervisors.

Evaluation of CCC projects can be challenging. Because they are designed to evolve over time, they can shift midstream, use a variety of facilitators and modes of engagement (we created poems, stories, a play, a mile-long weaving, etc.), and the participants come and go throughout the two-year project. For Penelope, we used pre/post surveys to capture changes in attitudes toward aging and people with dementia; focus groups; and semi-structured interviews with stakeholders (see results in Rose et al., 2016). In new CCC projects, we are gathering clinical data on depression, mood and behavior. We are also sending brief, monthly online surveys to facilitators of the creative workshops to gather information on numbers of participants, quality of engagement, unexpected outcomes, and job satisfaction.

The promise of CCC model

The cultural community-building approach has significant promise for destigmatizing and improving the lived experience for people with dementia and their families. Negative attitudes about aging and dementia, as well as social isolation that is born of such attitudes, have been shown to have serious negative effects on health. The culture and community building work that community-engaged artists in the United States have been applying to other populations for many years can and is being adapted and applied to people with dementia. The arts provide an accessible (emotional and symbolic) communicative tool for people with dementia to express themselves and participate in culture-making projects as equals. Assessing the impact of these projects is an ongoing challenge, but one that shows considerable promise for improving social networks, attitudes toward aging and dementia, organizational flexibility, and quality of life.

The ultimate promise of the creative community-building approach is that people living with dementia are consistently invited to become culture-makers in meaningful projects, and that care systems turn outward to rigorously engage with their communities to form partnerships to end the isolation and over-medicalization of the citizens in their care. Culture-making will not create a world without Alzheimer’s. But it can radically transform the way we experience it.