Creating a relational arts-based academy for persons living with dementia

Abstract

A hospital–university collaboration has created an innovative learning Academy for persons living with dementia. Authors propose essential foundations for creating a different culture of dementia care: a home-like, judgement free place; a relational space focused on artistic expression and discovery; and, the marriage of learning with a deep respect for difference and growth. An array of challenges and insights highlight the commitments required to create and sustain real change. Partnerships with community organizations and schools merged relational philosophy-based research, teaching–learning, and art to generate new patterns of innovative practices. The commitment of the Academy is to relational arts-based inquiry focused on relationships, life enrichment, and engagement in a space where everyone thrives.

Keywords

relational dementia caring arts-based innovation learning academy intergenerational education dementia culture change decreasing stigma

The acritical acceptance of the therapeutic culture, coupled with the tragedy discourse affiliated with the public face of dementia, diminish quality of life and jeopardize social justice for persons and families living with dementia (Foster, 2016; Mitchell, Dupuis, & Kontos, 2013). Calls for culture change and for relational practices offer alternatives to the predominant therapeutic and biomedical approach to aging (Dupuis, Kontos, Mitchell, Jonas-Simpson, & Gray, 2016). This paper will describe an innovation that created a different space – a relational space – for persons living with dementia, their care partners, and an entire community. We created the Dotsa Bitove Wellness Academy (hereafter referred to as the Wellness Academy) with a theoretically grounded curriculum of arts-based relational practices and activities. We will describe the conceptualization and creation of the relational philosophy of caring at the Wellness Academy and comment on various expectations and insights that inform the creation of relational spaces and literacies of dementia caring (Jonas-Simpson, Mitchell, Dupuis, Kontos, & Cross, 2017). Our work demonstrates that creating a new culture of relating where communities living with dementia can thrive, is persuasively possible, and the need for such change remains a compelling and critical mandate.

The call for innovation

We, along with our colleagues, have years of involvement in research and practice aimed at changing the culture of dementia communities, to help decrease the stigma and unnecessary hardship for persons labeled with dementia (see for example, Dupuis et al., 2016; Dupuis et al., 2012; Kontos, Grigorovich, Kontos, & Miller, 2016). Our collective work consistently indicated that the label of dementia is not only harmful, primarily for its exclusionary and judgmental consequences, but also because the label engenders care that neglects the importance of expressions of personhood and relationships for persons living with dementia and their families. Persons labeled with dementia are stripped of their citizenship status as they are often considered less than human, and are typically downgraded to bodily and cognitive functions that require diagnosis and management. Relationships, and in fact humanity, slip into the background of the downgrade, and assessment and management dominate practices among professionals. The decades of our work to counter the dehumanizing nature of dementia care prepared us for the opportunity that emerged in our collaborative work.

Creating a Wellness Academy

The donor family (Bitove), who provided funding for our innovative space, had experienced a different model of dementia care for their matriarch, Dotsa Bitove. At Florida Atlantic University (FAU), a special programme called the The Louis and Anne Green Memory and Wellness Center (see http://nursing.fau.edu/outreach/memory-and-wellness-center/) was created in 2000 (Hain, Touhy, Sparks, & Engstrom, 2014; McCaffrey, Tappen, Lichtstein, & Friedland, 2013) using a partnership model to maximize comprehensive care for persons living with memory disorders. The Green Center, an adult day care programme, is remarkable for its location on the FAU campus, and for its caring philosophy led by nurse practitioners with a commitment to providing excellent care. The Green Center provides team-based dementia care and treatment for early and mid-stage dementia of the Alzheimer’s Type. The Green Centre team, while diagnosing and treating persons with memory disorders, respects individual choice and involvement in care planning for persons and families.

The Green Center inspired the Bitove family to initiate a similar care facility in Canada. The family was affiliated with University Health Network (UHN) – an organization with several hospitals and programmes, including aging and memory care. UHN had established a novel partnership with York University School of Nursing in 2009 with several arts-based research projects and relational practice initiatives. This partnership brought three leaders into initial discussions with the Bitove family – Joy Richards (VP at UHN), Gail J Mitchell (York Nursing Faculty and Director), and Susan Brown (Senior Director, UHN). All three had experience in gerontological nursing, dementia care, and environmental design, respectively. The Bitove family and York/UHN leaders shared a vision for what a Wellness Academy for persons living with memory loss and dementia could become with the integration of arts/aesthetics, relational philosophy, and academic infusion, including intergenerational activities.

The creation of the Wellness Academy took two years to complete with a Steering Committee made up of family members, UHN representatives (operational partner), and York University representatives (academic partner). It was decided very early that the Academy needed to be located away from hospital sites in order to create distance between the biomedical model and the Wellness Academy. The Academy was conceptualized as a place of learning and ideally would be located on the university campus. However, the university campus location was not accessible. Extensive searching led the team to select a space on the lower level of a community building. The space is in a convenient location that provided the Wellness Academy with its own entrance and easy access for drop off and pick up. It overlooks a large ravine with trees, gardens, and pathways for walking. The newly acquired section of the lower level was designed to maximize natural light with warm earth colours and to create open relational/community spaces that could facilitate art creation, movement/dance, music, and gatherings for meals and social activities. The family participated in many design decisions with the Steering Committee, and Dotsa Bitove was involved in deciding colour schemes and art work. We were ready for the next set of challenges.

Challenges in creating relational spaces for transforming dementia care

Defining the philosophy of the Wellness Academy

The philosophy was a foundational structure of the Wellness Academy and was clearly identified from the beginning of the project. The philosophy aligned with the Steering Committee and family vision, our (Mitchell and Jonas-Simpson) research and nursing practices with persons and families living with dementia. In order to lay a strong foundation to support change, relational and culture change researchers and experts, Dupuis and Kontos, were invited to join the Academic Advisory Board. We all knew we had to create a space that had the following three essential qualities:

home-like space focused on relationships and learning

arts-based mediums for life enrichment, engagement, and relationships

relational philosophy.

First, the space needed to be welcoming, home-like, non-judgemental, and non-hierarchical. The challenge of creating such a space is linked with the reality that care spaces for persons living with dementia are predominantly steeped in traditions of assessing and assigning a value/label based on normality and on the degree of impairment and/or function. Documenting assessments, selecting interventions to change or manage behaviours, and prescribing desired outcomes has been, and continues to largely define expected competencies of professional practices. Judgement and management expertise are the foundations of most health disciplines. The look and feel of home-like environments are not consistent with assessing, judging, and intervening to control problematic behaviours, and the clinification of everyday life where music, arts, and engaging with pets all become therapies to address prescribed goals (Dupuis et al., 2012). Research suggests that feeling at home means feeling safe and in control, being free to live one’s values and daily routines, having quality relationships (with people, objects, pets, the arts), and feeling a warm sense of belonging (Nolan, Ryan, Enderby, & Reid, 2002; Rijnaard et al., 2016). Further, we contend that when the assessing and labeling process is carried out, even with great care and respect, it can still be detrimental. The predominant structures – rules, policies, and practices – that are deeply established in traditional dementia care restrict efforts to create home-like environments despite the efforts of caring professionals.

We needed to create different guidelines, rules, policies, and practices that would support and nourish a space of welcome, non-judgement, and relational practices; our commitment was to focus on relationships among people, ideas, preferences, memories, and histories and recognize the broader relational embeddedness of all human beings. These included the following:

The Wellness Academy will be a judgement free space – no assessments, no functional or cognitive testing, no diagnosing, and no labeling or segregating based on function or role.

The larger common space will support community meals where everyone sits and joins in the conversation and engagement.

Activities will be planned with flexibility in order to follow the lead of the participants and their choices for freely moving and joining in.

Everyone in the space, including the staff, students, artists, volunteers, care partners, visitors, and leaders will wear a name tag with first names only in order to avoid labels and hierarchies.

Formal and informal care partners will be welcomed in the space and will participate with everyone in the community.

We committed to a relational philosophy that aligned with Olthius’s (2000) “hermeneutics of connection – a fourfold spiraling hermeneutic movement of attending to, journeying with, birthing, and transforming” (p. 138). We employed a relational Registered Nurse (RN) Health Coach who plays a key role of living and teaching the philosophy of hermeneutic connection and relationality. The programme themes that initially informed academic activities in research, education, and practice included: (a) self-expression through relational arts, movement, and conversation; (b) health and well-being; (c) intergenerational learning; and (d) intentional engagement.

The second essential quality for the Wellness Academy was the inclusion of community-based practicing artists who provide relational arts-based curricula and activities according to individual preferences and group engagement. The intent of the arts-based activities is not to provide therapy or diversion, as is the case in many arts-based programmes (Dupuis et al., 2012). Rather, the art activities were initiated in order to present opportunities for participants to more fully express themselves, in the moment with others. Artists provide opportunities to discover and develop new talents. Participants paint, create poetry, listen to music, sing songs, dance, engage in improvisation, learn to play musical instruments, and compose songs as inspired by the relationships unfolding in the moment. Artists attend and are attuned to the relational processes of expression and discovery with individuals and groups. The success of the arts-based programme is linked with the relational expressions of the entire community – of joy, sorrow, delight, connection, engagement, accomplishment, remembrance, and love.

Activities at the Academy needed to be available and happening without prescribing or controlling how Academy members might engage. Freedom to be in the space and participate as desired was a key commitment. For example, in one room, an artist can be playing music and inviting persons to move with the music or sing along, and in another room, an artist can be engaging members in theatre improvisation with costumes and props for acting in the moment. Our intent was to learn what people liked to do and to be flexible with their moving in and out of activities. Forcing or limiting choice with arts-based activities was not an option. We turned to metaphor to try and capture the ideas of the freeing movement in the space – like a fairground where people explore the various activities freely – or murmurations where there is a flow of support for Academy members as they move from one meaningful engagement to another.

The third essential quality identified early in the creation of the Wellness Academy was that every person in the space embody the philosophy of relational caring. The foundational philosophy has three main concepts that provide direction for all decisions at the Academy. The three concepts informing the philosophy are: relationality/hermeneutic of connection (Nolan et al., 2002; Olthius, 2000), embodied selfhood (Kontos, 2012), and knowing other-wise (Olthius, 1997). Relationality is lived with the commitment to value quality of relationships as most important (Jonas-Simpson et al., 2017) and to see persons with memory loss as living in a web of complex relations with history, culture, community, family, ideas, beliefs, hopes, fears, memories, time, and possibility. Embodied selfhood is lived in the commitment to recognize and nurture bodily movements, gestures, and dispositions, which sustain and animate self-expression in creativity, religious practices, friendship, social norms and customs, and more (Kontos and Naglie). Because such expressions are always intertwined with a shared world, embodied selfhood highlights the relational nature of our humanity. It also is understood not as a function of cognitive agency but rather as pre-reflective, and thus despite cognitive loss, selfhood persists in interactive and communicative patterns of relating. Knowing other-wise (Olthius, 1997) is a commitment to approach differences between and among people as opportunities to learn. Engaging with difference opens spaces for seeing and understanding different realities. Differences in this philosophy of relational caring is the opening for discovery, understanding, and relating.

Because our philosophy of relational caring is so fundamentally different from the dominant philosophies and approaches in dementia care, ensuring that everyone in the space was deeply committed to learning our foundational philosophy was very important. Wellness Academy team members were engaged in arts-based educational workshops, such as exploring concepts of relationality in articles and in artistic creations, in order to explore and reflect on foundational principles. But calling for the enactment of specific philosophical values proved to be the greatest challenge. We provide additional detail of this challenge in the next section.

Creating the Academy team

As noted previously the Wellness Academy was created in a partnership between UHN, the operational partner, and York University – both complex organizations with layers of protocol, policy, and tradition. Four key roles were identified that needed to be filled with full-time staff: a programme coordinator; a programme assistant; an RN Health Coach; and an operational lead/manager. The four roles were complemented with volunteers and a part-time team of practicing, multi-skilled artists recruited from the community. A part-time artist coordinator was hired to support the artists and their integration into the Wellness Academy space, which meant understanding the philosophy and integrating research findings into the activities. Understanding that the focus at the Academy is not on the art, rather that art is a medium for engagement, life enrichment and relationships, was essential for artists joining the Academy.

Staff and artists were supported by two researcher/educator leads who were steeped in the philosophy and who had extensive research and practice experience with persons/families living with dementia. The role of manager required someone who could be part of the team and who would be a role model for the philosophy as it is lived in the entire space. Several managers were hired before finding the right fit – a manager who was willing to embrace and support the relational caring philosophy as well as create the space and operational structures for team members to live the philosophy in creative loving ways.

The Wellness Academy’s location away from the downtown hospital sites presented both opportunities and limitations. The opportunity was the freedom to create a new space that was aesthetically pleasing, accessible, home-like, and inviting. Some limitations originally were tied to the distance from UHN. For example, staff members are UHN employees, and due to the separate location, staff could not easily receive coverage for breaks and UHN leaders had to travel to meet with the manager. Also the unique philosophy of the Wellness Academy meant that the staff could not easily be replaced for time off and those covering had to be oriented to the philosophy and relational practice.

Support for Academy members to attend

The Wellness Academy space was originally created to support a maximum of 25 persons per day. The Academy accepted its first members in 2013. Academy members can attend either a half day or full day, one to five days a week, and the number of members continues to grow as we expand. Because the Wellness Academy is not a day programme but rather an academy for teaching–learning, academic innovation, and research, funding was not provided by the government. The Academy is funded primarly by donors, by members’ fees, and various fundraising activities such as fashion shows, walks and runs. There is a scholarship fund for members who cannot afford to pay. We wish that all persons living with dementia could attend this relational arts-based programme, but without funding from the government we rely on private donor support. However, with the absence of public funding comes freedom from restrictive policies and standards often placed on adult day programmes.

Expectations and the emergence of a thriving community

The challenge of meeting expectations (personal and external) was intense for all who worked or volunteered at the Wellness Academy. Success indicators varied according to each person’s interest and perspective in the space; however, the vision and commitment of the founding team stayed the course. Committing to the creation of a different way of relating with persons diagnosed with dementia and doing so with a diverse team required perseverance, courage, vision, hope, and unwavering belief in the possibility of this new relational space. These commitments paid off as the Wellness Academy laid deep and strong roots that would support what has become a thriving community.

Today, six years since the grand opening, the Wellness Academy has expanded in space and numbers (up to 65 members can now attend) and is a thriving community where persons attending feel free to be who they are (Jonas-Simpson et al., 2017). Our vision is to be global leaders in relational art-based inquiry and caring. Our mission is to create places of learning and spaces of possibility, where persons, care partners, and communities living with dementia can thrive. Building on our values and commitments to enhance expressions of self through movement and art, coupled with relational activities that focus on discovery and growth, we have learned several things.

First, we learned just how important an environment free of assessment and judgment is for quality relationships. Participants at the Academy have taught us that freedom from judgement and labels is a foundational attribute for a culture change in dementia care. We witness the wisdom that all persons hold in a space where young and old share in order to learn from each other. We witness how compassionate relating is foundational for living in the moment, kindness, and enjoyment. We attend to and articulate the basic rights of all participants as citizens who require and are deserving of membership in a community that provides for relational caring, possibility, life enrichment, and thriving with dementia (Dupuis et al., 2016).

The Bitove Wellness Academy team embodies the relational philosophy, individually and as a collective in authentic loving ways. Academy members, students, volunteers, informal and formal care partners are all part of this loving and supportive community. Discussions about the philosophy occur daily; informally during huddles at the beginning and the end of day, or during conversations throughout the day; and, formally during workshops. Everyone in the space is considered a teacher and a learner and as we teach students about our relational arts-based philosophy – we too continue to grow and learn. We regularly explore ways to nurture the resilience of our team in order to live relational arts-based inquiry day by day over several years with Academy members who become part of the Wellness Academy family. Team members support many persons with dementia well into their journey and to their journey’s end. There is no pre-defined graduation from the Academy based on testing or assessment.

Transgenerational learning programme

Our transgenerational learning programme, with engaged teaching–learning across generations, has grown from 1 high school student in 2014 to approximately 35 students each academic year. Students from high schools, colleges, and universities attend the Wellness Academy as part of their curriculum. The students who attend are studying a variety of disciplines across the Greater Toronto Area, Ontario, and the UK including nursing, dance, social work, medicine, shiatsu, rehabilitation studies, interdisciplinary graduate studies, and urban planning. One vibrant intergenerational initiative was the music project with a local high school, where high school students attend the Wellness Academy for their music leadership course. Students came as a large group four times throughout the academic year and individually or in pairs to engage with Academy members. The focus, once again, was on music as a medium for relationships, engagement and life enrichment, and not the music itself. The change experienced by students and Academy members over a year was inspiring. One student said,

this has been the most amazing experience of my life, I mean to learn, you learn so much from the people that are at the Academy and they learn so much from you and it’s just such a group and friendly environment and we all work together to accomplish the same goal and we all have the same goal in mind …which is just to sing and to love music and to remember the past but also experience the present and to live in the moment and to always just laugh and dance and love.

The Academy is not only a space for persons to come to engage in relationships and the arts, it is also a research and innovation unit. Research conducted by Advisory Committee researchers individually and collectively initially grounded the Academy programme and curriculum, and continues to influence the philosophy and practice (see for example, Dupuis et al., 2016; Gray, 2016). Further there are research studies emerging from the Academy. Two of these studies, one on transgenerational learning (Cross, Jonas-Simpson, & Meschino, 2017) and the other on experiences of relational caring (Jonas-Simpson et al., 2017), were made into short films (see http://www.dotsabitove.com/research-based-art). The third research-based film, MusicIsLife, is forthcoming and will be launched in 2020.

A way forward

We now have a way forward – living a new culture of dementia caring where communities living with dementia not only survive but thrive. The need to decrease the stigma and unnecessary duress accompanying judgement, exclusion, and rejection for persons living with dementia has never been more important. Every person and every family living with dementia deserves to be treated with respect and be part of a compassionate community, like the Dotsa Bitove Wellness Academy, where relationships, discovery, and possibility are central. We continue to learn what happens when a relational caring philosophy and structure are not simply printed in materials or posted on the wall; we are learning what happens when it is lived and embodied creatively and authentically every day by loving compassionate team members and an entire community. We are learning what happens when there is freedom, when constraints are removed including stigmatizing attitudes, when there is no judgement, where team members embody relational caring in authentic ways and where relational space is sculpted to support the living of the philosophy. We are learning that a relational approach is essential to our humanity.

Footnotes

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) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Gail J Mitchell

Gail J Mitchell is professor of Nursing at York University. Gail's Research interests include dementia and relational caring, e-learning and complexity pedagogy, and arts-based practices.

Christine Jonas-Simpson is professor of Nursing at York University. Christine's research interests include dementia and relational caring, grief and loss, end of life care, and arts-based practices. Christine is also the producer of videos on grieving, loss, and relational practices.

Joy Richards is the vice president of Patient Experience & Chief Health Professions at University Health Network, Toronto, Canada. Joy's research interests include leadership, patient focused care, and patient/family experiences.

Susan Brown had oversight for securing the site, design, and construction of the Dotsa Bitove Wellness Academy as well as operational readiness planning for day one operations.

Vonna Bitove is a nurse, community leader, philanthropist, and business women who provided and continues to provide important family engagement and financial support for the Academy.

References

Cross

Jonas-Simpson

Meschino

(2017). Transgenerational learning through the arts at the Dotsa Bitove Wellness Academy [Research-based short film]. Toronto, ON, Canada. Retrieved from http://dotsabitove.com/research-based-art

Dupuis

Kontos

Mitchell

G. J.

Jonas-Simpson

Gray

(2016). Reclaiming citizenship through the arts. Dementia: The International Journal of Social Research and Practice, 15(3), 358–380.

Dupuis

S. L.

Whyte

Carson

Genoe

Meschino

Sadler

(2012). Just dance with me: An authentic partnership approach in understanding leisure in the dementia context. World Leisure Journal, 54(3), 240–254.

Foster

(2016). Therapeutic culture, authenticity and neo-liberalism. History of the Human Sciences, 29, 99–116.

Gray

(2016). An aesthetic of relationality: Exploring the intersection of embodiment, imagination and foolishness in research-informed theatre (Doctoral dissertation). Leadership, Higher and Adult Education, University of Toronto, Toronto.

Hain

Touhy

T. A.

Sparks

D. C.

Engström

(2014). Using narratives of individuals and couples living with early stage dementia to guide practice. Journal of Nursing Practice Applied Review Research, 4, 82–93. DOI: 10.13178/jnparr.2014.0402.0408.

Jonas-Simpson, C. (Producer), Mitchell, G. J., Dupuis, S., Kontos, P., & Cross, N. (Research team). (2017). Free to be: Experiences of relational caring at the Dotsa Bitove Wellness Academy [Research-based short film]. Toronto, ON, Canada. Retrieved from http://www.dotsabitove.com/research-based-art

Kontos

(2012). Alzheimer expressions or expressions despite Alzheimer’s? Philosophical reflections on selfhood and embodiment. Occasion: Interdisciplinary Studies in the Humanities, 1–12. Retrieved from http://arcade.stanford.edu/sites/default/files/article_pdfs/OCCASION_v04_Kontos_053112_0.pdf

Kontos, P., Grigorovich, A., Kontos, A. P., & Miller, K. L. (2016). Citizenship, human rights, and dementia: Towards a new embodied relational ethic of sexuality. Dementia, 15(3), 315–329.

10.

McCaffrey

Tappen

R. M.

Lichtstein

D. M.

Friedland

(2013). Interprofessional education in community-based Alzheimer’s disease diagnosis and treatment. Journal of Interprofessional Care, 27(6), 534–536. DOI: 10.3109/13561820.2013.817384.

11.

Mitchell

Dupuis

Kontos

(2013). Dementia discourse: From imposed suffering to knowing other-wise. Journal of Applied Hermeneutics, 5, 1–19. Retrieved from http://jah.journalhosting.ucalgary.ca/jah/index.php/jah/article/viewFile/41/pdf

12.

Nolan

Ryan

Enderby

Reid

(2002). Towards a more inclusive vision of dementia care practice. Dementia: The International Journal of Social Research and Practice, 1(2), 193–211. DOI: 10.1177/147130120200100206.

13.

Olthius

J. H.

(Ed.). (1997). Knowing other-wise. Philosophy at the threshold of spirituality. New York, NY: Fordham.

14.

Olthius

J. H.

(2000). Otherwise than violence: Toward a hermeneutics of connection. In The arts, community and cultural democracy (pp. 137–164). London, England: Palgrave Macmillan.

15.

Rijnaard

M. D.

van Hoof

Janssen

B. M.

Verbeek

Pocornie

Eijkelenboom

… Wouters

E. J. M.

(2016). The factors influencing the sense of home in nursing homes: A systematic review from the perspective of residents. Journal of Aging Research. DOI: 10.1155/2016/6143645.