Sherry L. Dupuis’s research while affiliated with Buck Institute for Research on Aging and other places

With the biomedicalization of death in Canada, and the stigma associated with both dementia and death, people living with dementia (PLwD) in Canada suffer painful and undignified end-of-life (EOL) experiences. There is growing evidence that relational approaches, which value relationships as complex and dynamic connections including broader social, cultural, political, and environmental forces, can reduce stigma and improve quality of care. Yet, these approaches have not been explored or implemented in EOL care. Further, despite that EOL care is a priority in a number of national dementia strategies, EOL research in Canada remains limited and has largely neglected the inclusion of PLwD. To address these limitations, we conducted arts-based research conversations with PLwD in residential care settings in Ontario, Canada. These sessions were guided by Liberation Arts (i.e., using the arts to challenge oppressive attitudes, policies and practices), co-facilitated by community artists and researchers, and focused on what compassionate, relational EOL care looks like from the perspectives and experiences of PLwD. Transcripts of the audio-recorded conversations and the art created with PLwD were analyzed using the participatory Critical and Creative Hermeneutic Analysis Framework. Our analysis highlights EOL as relational (i.e., a communal rather than an individual process), as demonstrated by prioritizing relationships (e.g., human, pets, biographical objects, place/space), honoring PLwD (e.g., cultural/religious traditions, contributions to life), and supporting living life until the end. Our analysis contributes to the nascent EOL research that is inclusive of PLwD and will importantly inform a new model of EOL care grounded in relational caring.

Metaphors to describe and understand dementia have been used in Western culture for many years. However, the ways in which people living with dementia and care partners use metaphors and symbols to illustrate and give meaning to their own experiences has been less understood. In this paper we explore the use of metaphor as methodology-- a way to support people living with dementia and their care partners in reflecting on and sharing their experiences of dementia. More specifically, drawing on our experiences using metaphor and symbols to map out the dementia journey from the perspectives of people living with dementia, care partners, and health and social care providers in Ontario, Canada, we describe our process of employing metaphor as methodology. We reflect on the use of metaphor as methodology through framing the dementia experience, exploring complexity, and representing multidimensionality. The use of metaphors has the potential to open space for new understandings of dementia.

Physical activity improves the well-being of persons living with dementia but few exercise programs include them. The Dementia-Inclusive Choices for Exercise (DICE) toolkit aims to improve exercise providers' understanding of dementia and ability to support persons living with dementia in physical activity. We evaluated the co-designed DICE toolkit with exercise providers using a mixed-methods approach comprising pre/post questionnaires and interviews and reflection diaries. Among 16 participants, self-efficacy for exercise delivery to persons living with dementia and both knowledge and attitudes toward dementia significantly improved. Thematic analysis suggested participants (a) had a deeper understanding of the variability of dementia, (b) were planning for equitable access for persons living with dementia, (c) planned to promote social connection through exercise, and (d) were optimistic for future engagement with persons living with dementia. The DICE toolkit may improve exercise providers' knowledge and confidence to plan proactively to support persons living with dementia in programs and services.

Persons with dementia have the right to equal inclusion in rehabilitation, including physical activity. However, the perspectives of persons with dementia are rarely integrated into decision-making related to physical activity programming, services, and supports. Here, we describe the participatory action research (PAR) approach used to develop the Dementia-Inclusive Choices for Exercise (DICE) toolkit, which aims to increase the quality and number of physical activity opportunities available to persons with dementia. The DICE Research Team included persons with dementia, a family care partner, exercise professionals, community and dementia service providers, health care professionals, and researchers who worked to: 1) Engage/maintain the Research Team; 2) Set/navigate ways of engagement; 3) Understand barriers to physical activity; 4) Prioritize the audience and actions; 5) Develop the toolkit; 6) Conduct usability testing; and 7) Implement and evaluate. Guided by the Behaviour Change Wheel, and informed by interviews, focus groups, and existing research, our PAR Team chose to prioritize training exercise providers; exercise providers can enable exercise for persons with dementia if they understand common changes with dementia and how to support persons with dementia in exercise. The content and format of the toolkit was co-developed: drafted by our Research Team, adapted through a stakeholder workshop, and refined through iterative development and usability testing. The product of our PAR process, the DICE toolkit, includes videos meant to destigmatize dementia, training modules and a training manual for exercise providers, a physical activity handout for persons with dementia, and wallet cards to help persons with dementia communicate their abilities, needs, and preferences. Our usability study indicated that the toolkit could be used by exercise providers and may improve attitudes about dementia. Our vision is that our co-developed DICE toolkit will empower exercise providers to improve physical activity opportunities and support for persons with dementia.

Background and objectives: Relational caring has the capacity to reduce stigma associated with dementia by shifting the focus from dysfunction and behavior management, to attending to the interdependencies and reciprocities that underpin caring relationships, and making explicit the centrality of relationships to quality care, growth, and quality of life. Education, particularly arts-based approaches, have been identified as a key strategy to decrease stigma. Yet rarely are the arts utilized in educational initiatives, and particularly so in community care settings. With an interest in redressing this, our team evaluated the impact of a Canadian filmed research-based drama - Cracked: new light on dementia - about stigma associated with people living with dementia and their families. Research design and methods: We conducted interviews with family carers of people living with dementia and formal care providers affiliated with community-based dementia care, and also the general public at 3 and 8 months post-screening. Results: Our analysis of participants' perceptions/experiences illustrates the effectiveness of Cracked in reducing stigma by demonstrating changes in understandings of dementia and changes in practice. Our analysis also includes attention to how the film, as a form of cultural production, deepened engagement and facilitated transformation. Discussion and implications: Our evaluation of Cracked demonstrates that it is an effective strategy for decreasing the stigma associated with dementia by promoting relational caring. It also importantly contributes to the theoretical literature that supports film-based approaches to stigma reduction.

Background: Person-centred care is at the core of high-quality dementia care but people living with dementia are often excluded from quality improvement efforts. We sought to explore person-centred care and quality of care from the perspectives of persons living with dementia in the community and their care partners. Methods: We used a qualitative descriptive approach with in-person, semi-structured interviews with 17 participants (9 persons living with dementia and 8 care partners) from Ontario, Canada. Results: Participants report that person-centred care is essential to the quality of dementia care. Three themes were identified that describe connections between person-centred care and quality of care: 1) "I hope that the people looking after me know about me", 2) "I just like to understand [what's happening] as we go down the road", and 3) "But the doctor doesn't even know all the resources that are available." Participants perceived that quality indicators over-emphasized technical/medical aspects of care and do not entirely capture quality of care. Conclusions: Persons living with dementia and their care partners provide important insights into person-centredness and quality of care. Their perspectives on "quality" may differ from clinicians and researchers. Research is needed to better integrate their perspectives in quality improvement and person-centred care.

Background Many people living with dementia eventually require care services and spend the remainder of their lives in long-term care (LTC) homes. Yet, many residents with dementia do not receive coordinated, quality palliative care. The stigma associated with dementia leads to an assumption that people living in the advanced stages of dementia are unable to express their end-of-life needs. As a result, people with dementia have fewer choices and limited access to palliative care. The purpose of this paper is to describe the protocol for a qualitative study that explores end-of-life decision-making processes for LTC home residents with dementia. Methods/design This study is informed by two theoretical concepts. First, it draws on a relational model of citizenship. The model recognizes the pre-reflective dimensions of agency as fundamental to being human (irrespective of cognitive impairment) and thereby necessitates that we cultivate an environment that supports these dimensions. This study also draws from Smith’s critical feminist lens to foreground the influence of gender relations in decision-making processes towards palliative care goals for people with dementia and reveal the discursive mediums of power that legitimize and sanction social relations. This study employs a critical ethnographic methodology. Through data collection strategies of interview, observation, and document review, this study examines decision-making for LTC home residents with dementia and their paid (LTC home workers) and unpaid (family members) care partners. Discussion This research will expose the embedded structures and organizational factors that shape relationships and interactions in decision-making. This study may reveal new ways to promote equitable decision-making towards palliative care goals for LTC home residents with dementia and their care partners and help to improve their access to palliative care.

COVID-19 public health measures have significantly impacted persons living with dementia (PLWD) and family caregivers (FCGs). Given the restrictions on in-person services, many PLWD were not able to access their usual supports and activities, resulting in FCGs stepping in to support exercise, leisure, socialization, spirituality, and activities of daily living. At the same time, FCGs’ own support networks were significantly reduced or no longer available. We conducted in-depth qualitative interviews with 20 FCGs of PLWD in the community to explore the impact of COVID-19 on their well-being. Data were analyzed using thematic analysis. Caregiving during COVID-19 was described as ‘draining’ and ‘stressful’, with the support needs of PLWD increasing at a time when fewer supports were available. Reaching out to others, using technology, and setting boundaries were strategies FCGs used to cope. Despite the considerable impacts of COVID-19, FCGs of PLWD demonstrated their resilience in supporting themselves and their PLWD.

Background: COVID-19 has been devastating for older adults, particularly residents in long-term care/retirement (LTC) homes. In an effort to curb the transmission of COVID-19, public health measures have been put in place in many LTC homes, including mask wearing, physical distancing, and visitor restrictions. As the pandemic passes the one-year mark, we are starting to understand the profound impacts of COVID-19 and the corresponding public health measures on persons living with dementia (PLWD) and their family care partners (CPs). This research is part of a larger study exploring the impact of COVID-19 on the wellbeing and social connections of PLWD and CPs. In this presentation, findings from qualitative interviews conducted with CPs of PLWD in LTC homes are shared. Methods: The overall study used an intrinsic case study design, involving survey and interview data. Following completion of a survey, participants were invited to participate in an in-depth qualitative interview. Interviews were conducted by phone or online, transcribed verbatim, and analyzed using thematic analysis. Results: Eighteen CPs were interviewed. The impact of visitor restrictions varied between LTC homes and changed over the course of the pandemic, which was extremely challenging for CPs. At homes with visitor restrictions, the inability to visit family members with dementia was described as stressful, unfair, and frustrating. CPs stressed the importance of being able to visit their relatives, and ensuring their family members had regular social interaction to support their physical, social and emotional wellbeing. Even when CPs could visit, masks and physical distancing made communication with some PLWD challenging. Visitor policies also influenced perceptions of care. Some CPs felt that the needs of their family members with dementia were being met by the home, while others weren't sure because CPs weren't in the homes to assist staff and provide support to their family members with dementia. Conclusion: While COVID-19 and the pandemic restrictions have been difficult for all CPs of persons with dementia in LTC, for some it has been agonizing. Understanding these varied experiences can help inform the development of individually-tailored resources to better support the wellbeing of CPs.