Reconceptualising relationships in the dementia context: Imagining the caring process as fertile ground for friendship between persons living with dementia and paid care partners
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Date
2020-07-02
Authors
Engell, Katia
Journal Title
Journal ISSN
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Publisher
University of Waterloo
Abstract
Increasing concerns about the task-oriented, disease focused, and impersonal culture of Long Term Care (LTC) have led to calls for the adoption of relational caring, advocating for relationships to be at the centre of all caring. Most recently, the COVID-19 pandemic and subsequent outbreaks in LTC homes have emphasized the downfalls of the current culture of care, highlighting the need for a reimagining of the LTC system. Relational caring has the potential to rehumanize, destigmatize, and value and honour both residents with dementia and Personal Support Workers (PSWs) working in LTC homes. While existing literature on relational caring emphasizes the importance of building authentic relationships with one another, friendship remains an under-explored concept in caring contexts, especially between residents and paid care partners. Further, experiences of friendship between persons with dementia and PSWs continue to be limited by professional boundaries, misconceptions about dementia, as well as rigid, traditional notions of what friendship is.
Guided by relational cultural theory and an arts-based methodology, I collaborated with residents with dementia and PSWs living and working in an LTC home to interrogate and challenge how friendship was conceptualized in the LTC setting, prior to COVID-19. Using collaborative arts, we collectively explored understandings of and barriers to friendship in caring relationships. Through Voice-Centered Relational analysis, which captures the complexity of participants’ relational stories, several patterns emerged in this data that provide a deeper understanding of how friendship is experienced in the home, and what matters most to participants in these friendships. Participants in this study identified nuanced ways in which friendship is impeded in the home and insight into how friendship might be better supported. On the other hand, participants shared several stories of friendship and spoke of three good feelings that emerged in these relationships: feeling like more than just a task, feeling remembered, and feeling loved.
This research further informs calls for relational caring and how this culture change may be facilitated in the LTC context, as well as informing new understandings of friendship between residents and paid care partners. This study also supports the use of arts-based research methodologies to conduct critical, social-justice oriented research in accessible, nuanced, and enjoyable ways. Finally, this research can contribute to a re-imagining of LTC settings as we reshape our systems after COVID-19, a future of LTC where relationships and friendship are prioritized for all persons living and working in LTC homes.
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Keywords
long-term care, relational caring, dementia, friendship, culture change