Smashing Stigma: Creating Inclusive Spaces to Build Community

By Sadie Harmon

The Dementia-Inclusive Communities Initiative started with a grand vision to significantly move the needle toward a truly inclusive society for people living with dementia and their care partners. This was borne not only from the mission and vision of our parent organization, Elder Care Alliance, but also from a recognition of real need. There is no doubt that the confluence of an increase in dementia diagnoses, an aging population, and a lack of adequate care and infrastructure is an emergent public health crisis. Without broad action and a significant investment of resources, we face not only a financial and practical disaster, but also an ethical and existential one.

Art may seem an unlikely conduit to solve this problem given that many low and average-income older adults, especially people living with dementia, are at risk of not having even basic needs met, such as adequate nutrition and medical care. Many excellent initiatives focus on this exigency and are developing networks and systems to support everyone as they age. However, even this will not be enough, and there are still many gaps that will have real human consequences. The Dementia-Inclusive Communities Initiative intentionally uses a cultural framework to fill these gaps, founded on the belief that the arts are a truly inclusive medium and an ideal place to think creatively about access. Many art forms communicate non-verbally through movement, images, and objects, crossing verbal and linguistic boundaries. Limitations and barriers often make art richer, deeper, and more meaningful for both its creators and audience. And finally, making and engaging with art fosters innovation and creative problem-solving in other areas as well. Additionally, the arts have been shown to have health and cognitive benefits for older adults, and there is evidence that access to art can improve mood and decrease emotional distress for people living with dementia, while also providing emotional and social benefits for caregivers.

The writer David Foster Wallace described the concept of “the water we swim in” through a short story: “There are these two young fish swimming along and they happen to meet an older fish swimming the other way, who nods at them and says, ‘Morning, boys. How’s the water?’ And the two young fish swim on for a bit, and then eventually one of them looks over at the other and goes, ‘What the hell is water?’ ” The water in this story represents the conditions that are around us, that we oftentimes can’t see, let alone do anything about. The idea that we could actually change our circumstances by recognizing them for what they are is somewhat revolutionary and increasingly urgent. Our existing systems and structures are not sustainable and often operate because they are built to exclude and oppress some people for the benefit of others. This condition exists in many systems that affect our quality of life as we age – it is baked into our healthcare, into our housing, into our transportation and the ways that we design and build our cities. In order to clearly see these systems and the ways in which they harm us and keep us from building a truly equitable & care-full society, we must learn to see differently. What better way to gain a new perspective than through the highly subjective, flexible, experience-rich practice of art?

If it is important to see differently, it is equally important to include the voices of those who have been historically marginalized and overlooked. This is why the two essential questions underlying the Dementia-Inclusive Communities Initiative have become: 1. How do we ensure that conversations about dementia-inclusive and livable communities are centered on the voices of people living with dementia and their caregivers & care partners and 2. What are the possibilities for the arts to achieve this goal? We realized from the outset that in order to effectively and ethically invite people living with dementia to participate in this project we would need to provide clear reasons and benefits for participation and a well-formed structure with well-facilitated opportunities for engagement. Additionally, back-end work would need to be done to establish a safe and supportive culture. Once these tools were in place as a foundation, we could invite community members in to expand upon, edit, modify, challenge, and change their content and form. This is a collaborative art practice, using the tools of creativity to address a collective problem, both concretely and abstractly. So while the initial goal of the project may be seen, simply, as to “increase arts access for people living with dementia,” its strategic goal is far deeper: to create a new practice of artistic collaboration that will change the water in which we swim – that will challenge us to be more inventive with our communication, to value many forms of personal expression as valid, and to redirect the perception of aging and the lived experience of dementia from pathology to culture.

For people living with dementia and their care partners, barriers to participation and access in the arts can be complex, and made more so when they intersect with other identities such as race, ethnicity, religion, gender identity & expression and sexual orientation. Creating dementia-inclusive arts and spaces is not so simple as paying for transportation or ensuring that museum tours are accessible (although that helps!) Equal attention must be paid to culture change – how do people feel seen, welcomed, and an essential part of the social spaces they inhabit? To that end, we have collected visual, written, and spoken feedback from people living with dementia, asking questions including "If I could design my own neighborhood, what would it look like?" and, "How do you describe yourself and how would you like others to describe you?" Additionally, we have developed pilot programs including an intergenerational teaching artist program that brings in young adults from local community colleges to work with professional teaching artists and low-income older adults in acute-care settings; a series of meetings that use strategies of participatory design and arts-based research to create a supportive community; and a dementia-inclusive museum tour that includes a community-building social gathering. To complete these pilot programs, we have partnered with teaching artists, cultural institutions, and organizations that serve older adults such as day programs, senior centers and subsidized housing. We use a program design that is critical and modeled after community-based methods like universal, participatory and co-design; arts-based and participatory action research; emergent strategy; and cultural equity and humility.

Activists like Kate Swaffer and John Sandblom of Dementia Alliance International have done a great deal toward creating a dementia culture and providing access points for people living with dementia who may otherwise have not easily connected with a peer network. This initiative does not seek to replace or disrupt existing dementia culture stewarded by people living with dementia. Instead, it looks to make a shift in society that will enable that culture to flourish. The Dementia-Inclusive Communities Initiative is a series of flexible, modular tools that all people can use to combat stigma, to amplify voices, and to forge healthy, substantive relationships with people living with dementia outside of a professional or familial context. We hope eventually to share these tools in a variety of ways, including innovative programs in conjunction with community partners, online toolkits and guides, and consultation and training for businesses, institutions, and other organizations.

The challenges posed by demographic change are vast and can feel overwhelming. There is no question that a major shift must occur – in our structures and systems, in our ability to care for one another, and in our openness and acceptance of difference. The Dementia-Inclusive Communities Initiative proposes new and innovative ways to invite people living with dementia as experts to contribute to solving these challenges. Art is our chosen tool because of its flexibility and inclusivity, but also because it has a variety of other qualities – it is fun, joyful, and pleasurable; it is beautiful and unexpected and thought-provoking; it provides meaning and helps us to understand our lives not only individually, but collectively.

Aging in America poster sessions will be presented Wednesday, April 17. See the full schedule here.

Sadie Harmon is Dementia-Inclusive Communities Director at the Elder Care Alliance.