A newly published study addresses the compelling call for connection and relationships for persons, families and communities living with dementia.
The qualitative research study, "Free to be: Experiences of arts-based relational caring in a community living and thriving with dementia," aims to address the gaps in literature by focusing on experiences at an arts-based academy for persons living with dementia that is guided by a relational caring philosophy.
It shares what is possible when the focus is on relationships and where the arts are the mediums for meaningful engagements that are both human and non-human.
Christine Jonas-Simpson
Led by York University Associate Professor Christine Jonas-Simpson from the School of Nursing in the Faculty of Health, the study's findings contribute to the growing body of knowledge about both relational caring and arts-based practices that highlight an ethic of care that is relational, inclusive and intentional.
The research was conducted in collaboration with: Gail Mitchell, York University School of Nursing; Sherry Dupuis, University of Waterloo; Lesley Donovan, Unity Health Toronto; and Pia Kontos, KITE-Toronto Rehabilitation Institute, University Health Network, and Dalla Lana School of Public Health, University of Toronto.
Few studies explore the meaning of arts-based, relationship-centred care or relational caring with an entire community living with dementia where the voices of persons living with dementia are also included. For this research, 25 participants were recruited from the arts-based academy and interviewed one-on-one or in small groups. Participants included five persons living with dementia, eight family members, four staff, five artists, one personal support worker and two volunteers. Participants were asked to describe their experiences of relational caring or relationships in the academy space.
Three themes were identified in the analysis of the interviews with participants:
- freedom and fluid engagement inspire a connected, spontaneous liveliness;
- embracing difference invites discovery and generous inclusivity; and
- mutual affection brings forth trust and genuine expression.
"Findings from this study shed light on what is possible when a relational caring philosophy underpins arts-based practices – everyone thrives," the study states. "As new settings and programs are developed, grounding them in a relational caring philosophy from the beginning and providing ongoing support of the principles will better support the transfer of the philosophy into practice."
Relationships, human and non-human, are essential for human flourishing and this is no different for a person living with dementia, says Jonas-Simpson, adding that when engagement in the arts is guided by relational caring philosophy, the arts become powerful mediums for connection and for relationships to grow and thrive.