Dementia-Inclusive Choices for Exercise Toolkit: Impact on the Knowledge, Perspectives, and Practices of Exercise Providers.

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.

Projecting a Critique of Stigma Associated With Dementia on Screen: The Impact of a Canadian Film on the Importance of Relational Caring in the Community.

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, has 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 postscreening. RESULTS: Our analysis of participants' perceptions/experiences illustrates the effectiveness of Cracked in reducing stigma by demonstrating changes in the understanding 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.

The dementia-inclusive choices in exercise project: Using participatory action research to improve physical activity supports for persons with dementia.

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.

"I Hope That the People Caring for Me Know About Me": Exploring Person-Centred Care and the Quality of Dementia Care.

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.

Free to be: Experiences of arts-based relational caring in a community living and thriving with dementia.

AIM: To present findings about experiences of relational caring at an arts-based academy for persons living with dementia. BACKGROUND: There is a compelling call and need for connection and relationships in communities living with dementia. This study shares what is possible when a creative arts-based academy for persons living with dementia grounded in relational inquiry and caring focuses on relationships through the medium of the arts. DESIGN: A qualitative phenomenological methodology (informed by van Manen) was used to answer the research question, "What is it like to experience relational caring at an arts-based academy for persons living with dementia?" We address two research objectives: (1) to explore how relationships are experienced when a relational caring philosophy underpins practice, including arts-based engagements; and (2) to understand the meaning of relationships that bring quality to day-to-day living. METHODS: Twenty-five participants were recruited from the Academy and interviewed in one-to-one in-depth interviews or 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. FINDINGS: Three thematic patterns emerged, which address the research objectives.Relational caring is experienced when:freedom and fluid engagement inspire a connected spontaneous liveliness;embracing difference invites discovery and generous inclusivity; andmutual affection brings forth trust and genuine expression. CONCLUSIONS: Findings contribute to the growing body of knowledge about both relational caring and arts-based practices that call forth a different ethic of care-one that is relational, inclusive, and intentional. Findings also shed light on what is possible when a relational caring philosophy underpins arts-based practices-everyone thrives.

In Their Own Words: How COVID-19 Has Impacted the Well-Being of Persons Living with Dementia in the Community.

COVID-19 has had a devasting impact on older adults in Canada, including persons living with dementia. This intrinsic case study sought to understand the perceptions of persons living with dementia regarding how COVID-19 has impacted their well-being. Ten persons living with dementia participated in in-depth qualitative interviews about their experience with COVID-19. Using thematic analysis, four themes were identified: (1) expressing current and future concerns; (2) social connections and isolation; (3) adapting to change and resilience through engagement and hope; and (4) we're not all the same: reflecting individual experiences of the pandemic. Results highlight that while COVID-19 contributed to isolation, concerns, and frustrations, persons with dementia also demonstrated adaptation and resilience. This study reinforced that persons with dementia and their responses to challenges are unique. Therefore, interventions to support persons with dementia must also be individualized to each person's abilities and circumstances.

Separate and Unequal: A Time to Reimagine Dementia.

The rapid emergence of COVID-19 has had far-reaching effects across all sectors of health and social care, but none more so than for residential long-term care homes. Mortality rates of older people with dementia in residential long-term care homes have been exponentially higher than the general public. Morbidity rates are also higher in these homes with the effects of government-imposed COVID-19 public health directives (e.g., strict social distancing), which have led most residential long-term care homes to adopt strict 'no visitor' and lockdown policies out of concern for their residents' physical safety. This tragic toll of the COVID-19 pandemic highlights profound stigma-related inequities. Societal assumptions that people living with dementia have no purpose or meaning and perpetuate a deep pernicious fear of, and disregard for, persons with dementia. This has enabled discriminatory practices such as segregation and confinement to residential long-term care settings that are sorely understaffed and lack a supportive, relational, and enriching environment. With a sense of moral urgency to address this crisis, we forged alliances across the globe to form Reimagining Dementia: A Creative Coalition for Justice. We are committed to shifting the culture of dementia care from centralized control, safety, isolation, and punitive interventions to a culture of inclusion, creativity, justice, and respect. Drawing on the emancipatory power of the imagination with the arts (e.g., theatre, improvisation, music), and grounded in authentic partnerships with persons living with dementia, we aim to advance this culture shift through education, advocacy, and innovation at every level of society.

Use of participatory action research approach to develop a self-management resource for persons living with dementia.

This article describes the use of a participatory action research (PAR) approach to developing a self-management resource for persons living with dementia and care partners. Despite growing evidence that persons with dementia are able to contribute in meaningful ways to decision-making about their care and life preferences, few opportunities exist for them to participate in the design of resources and services meant for them. There is also a need to support the self-management of persons living with dementia with the provision of accurate, high quality, user-friendly information. The Living Well with Dementia resource was developed through a partnership with persons with dementia, family members, Alzheimer Society representatives, primary care providers, and researchers. The methods used in the development of this resource are outlined in six steps employed in this process, from establishment of a PAR team to final resource creation. Informed by a whole systems approach, the resource brings together essential components of self-management into a comprehensive system of care and support for living. It empowers users to be active participants in the application of new knowledge to their lives. Better self-management has important implications for access to health care and quality of life for persons with dementia and care partners.

Dementia- and mild cognitive impairment-inclusive exercise: Perceptions, experiences, and needs of community exercise providers.

PURPOSE: For persons who are at risk for, or living with, dementia exercise is recommended, yet many become or remain inactive. Exercise providers play a vital role in promoting and facilitating exercise in these groups by recognizing and being responsive to the needs of persons with mild cognitive impairment (MCI) or dementia in exercise programming. The objective of this study was to explore the experiences, perceptions, and needs of community exercise providers regarding dementia. MATERIALS & METHODS: Five focus groups were held with community exercise providers (n = 30) who deliver exercise to older adults (≥55 years) in municipal, non-profit, for profit, or academic settings. RESULTS: Three themes were developed: (1) Unique experiences and diverse perceptions: suggests unique personal experiences with MCI and dementia inform distinct perceptions of dementia; (2) Dementia-Inclusive Practices: learning as you go and adapting for the individual: reflects exercise providers' approaches to recognizing and accommodating individuals' unique abilities and preferences; (3) Training and Best Practices, with Flexibility: identifies exercise providers' desires for MCI- and dementia-specific knowledge and training strategies, which need to recognize dementia heterogeneity between and within persons over time. CONCLUSIONS: These findings highlight a willingness of exercise providers to support dementia-inclusive exercise, but recognize they have minimal training and lack educational resources to do so. Formal training resources may enhance exercise accessibility and participation for persons with MCI or dementia.

Perceived Facilitators and Barriers to Exercise Among Older Adults With Mild Cognitive Impairment and Early Dementia.

Persons with mild cognitive impairment (MCI) and early dementia are often physically inactive, despite associated benefits. This study explored the barriers, facilitators, and preferences for exercise among persons living with MCI/early dementia. The authors conducted 2 focus groups among persons living with MCI/early dementia (n = 4, 6 participants) and 2 focus groups among care partners (n = 3, 4 participants). The transcripts were analyzed using thematic analysis, guided by the social-ecological model. Three themes emerged, reinforcing motivation to exercise, managing changes to cognitive and physical health, and variable perceptions of dementia, each with influences from individual, care partner, and community levels. Low intrinsic motivation, poor physical/cognitive health, and stigma restricted the exercise among persons living with MCI/early dementia. The care partners motivated their partners and provided company and transportation to exercise. People with MCI/early dementia also indicated poor access to exercise providers and exercise opportunities that met their needs and preferences was a barrier to exercise participation. Knowledge translation research should develop exercise interventions at the individual, social, and community levels.

Neighbourhood Team Development to promote resident centred approaches in nursing homes: a protocol for a multi component intervention.

BACKGROUND: As the demand for nursing home (NH) services increases, older adults and their families expect exceptional services. Neighbourhood Team Development (NTD) is a multi-component intervention designed to train team members (staff) in the implementation of resident-centered care in NH settings. A neighbourhood is a 32-resident home area within a NH. This paper presents the protocol used to implement and evaluate NTD. The evaluation aimed to 1) examine fidelity with which the NTD was implemented across NHs; 2) explore contextual factors associated with implementation and outcomes of the NTD; and 3) examine effects of NTD on residents, team members, family, and organizational outcomes, and the association between level of implementation fidelity and outcomes. METHODS: The study employed a repeated measure, mixed method design. NTD consisted of a 30-month standardised training and implementation plan to modify the physical environment, organize delivery and services and align staff members to promote inter-professional team collaboration and enhanced resident centeredness. Training was centred in each 32-resident neighbourhood or home area. Quantitative and qualitative data were collected with reliable and valid measures over the course of 3 years from residents (clinical outcomes, quality of life, satisfaction with care, perception of person centeredness, opportunities for social engagement), families (satisfaction with care for relative, person centeredness, relationship opportunities), team members (satisfaction with job, ability to provide person centered care, team relationships) and organizations (retention, turnover, staffing, events) in 6 NHs. Mixed models were used for the analysis. DISCUSSION: The advantages and limitations of the NTD intervention are described. The challenges in implementing and evaluating this multi-component intervention are discussed as related to the complexity of the NH environment. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT03415217 (January 30, 2018 - Retrospectively registered).

Psychometric Evaluation of the Team Member Perspectives of Person-Centered Care (TM-PCC) Survey for Long-Term Care Homes.

Person-centered care (PCC) is fundamental for providing high-quality care in long-term care homes. This study aimed to evaluate the psychometric properties of an 11-item Team Member Perspectives of Person-Centered Care (TM-PCC) survey, adapted from White and colleagues (2008). In a cross-sectional study, 461 staff from four long-term care homes in Ontario, Canada, completed the TM-PCC. Construct validity and internal consistency of the TM-PCC were examined with a principal component analysis and Cronbach’s alpha coefficient. Findings revealed a three-component structure with factor 1, Supporting Social Relationships; factor 2, Familiarity with Residents’ Preferences; and factor 3, Meaningful Resident⁻Staff Relationships. The TM-PCC, as compared to the original survey, presented with less components (i.e., did not address Resident Autonomy, Personhood, Comfort, Work with Residents, Personal Environment, and Management Structure), yet included one new component (Meaningful Resident⁻Staff Relationships). The TM-PCC has a similar internal consistency (Cronbach’s alpha coefficient 0.82 vs. White et al. 0.74⁻0.91). The TM-PCC can be used to assess PCC from the staff’s perspective in long-term care homes.

Re-claiming citizenship through the arts.

Healthcare literature, public discourse, and policy documents continue to represent persons with dementia as "doomed" and "socially dead." This tragedy meta-narrative produces and reproduces misunderstandings about dementia and causes stigma, oppression, and discrimination for persons living with dementia. With few opportunities to challenge the dominant discourse, persons with dementia continue to be denied their citizenship rights. Drawing on the concept of narrative citizenship, we describe a community-based, critical arts-based project where persons with dementia, family members, visual and performance artists, and researchers came together to interrogate the tragedy discourse and construct an alternative narrative of dementia using the arts. Our research demonstrates the power of the arts to create transformative spaces in which to challenge dominant assumptions, foster critical reflection, and envision new possibilities for mutual support, caring, and relating. This alternative narrative supports the reclamation of citizenship for persons living with dementia and fosters the relational citizenship of all.

Igniting Transformative Change in Dementia Care Through Research-based Drama.

PURPOSE OF THE STUDY: Little research has examined the lasting impact of the arts. As part of a longitudinal research project, we set out to examine how personal images, understandings, and actions of family members (FMs) of persons with dementia and health care professionals (HCPs) change after the introduction of a research-based drama about the experiences of living with dementia called I'm Still Here. This article focuses on the shorter- (6 weeks) and longer-term (12 months) experiences of engaging with I'm Still Here and how those experiences triggered personal transformation. DESIGN AND METHODS: Informed by phenomenology, this article presents findings from follow-up telephone interviews conducted 6 weeks and 12 months after FMs of persons with dementia and HCPs attended a live performance of I'm Still Here. RESULTS: The phenomenological shifts reflected in the longitudinal data suggest a process of engagement with research-based drama that involves four themes: bearing witness to suffering evokes compassion; expanding with new awareness and understanding; finding comfort, confidence, and courage to change; and envisioning and enacting new possibilities. IMPLICATIONS: Findings demonstrate the possibilities of the arts for knowledge mobilization in changing the culture of dementia care through a process of illuminating new and enduring realizations and transforming actions and practices.

Theoretical foundations guiding culture change: The work of the Partnerships in Dementia Care Alliance.

Longstanding concerns about quality care provision, specifically in the area of long-term care, have prompted calls for changing the culture of care to reflect more client-driven and relationship-centred models. Despite an increase in culture change initiatives in both Canada and the United States, there is insufficient information about the theories and approaches that guide culture change. The purpose of this paper is to describe a culture change initiative currently underway in Canada, the Partnerships in Dementia Care Alliance, and the theoretical foundations informing our work. More specifically, we describe how the theoretical and philosophical underpinnings of the Alzheimer Disease and Related Dementias framework, the authentic partnership approach, participatory action research and Appreciative Inquiry have been integrated to guide a culture change process that encourages working collaboratively, thinking and doing differently and re-imagining new possibilities for changing the culture of dementia care.

Strategies to support engagement and continuity of activity during mealtimes for families living with dementia; a qualitative study.

BACKGROUND: Mealtimes are an essential part of living and quality of life for everyone, including persons living with dementia. A longitudinal qualitative study provided understanding of the meaning of mealtimes for persons with dementia and their family care partners. Strategies were specifically described by families to support meaningful mealtimes. The purpose of this manuscript is to describe the strategies devised and used by these families living with dementia. METHODS: A longitudinal qualitative study was undertaken to explore the meaning and experience of mealtimes for families living with dementia over a three-year period. 27 families [older person with dementia and at least one family care partner] were originally recruited from the community of South-Western Ontario. Individual and dyad interviews were conducted each year. Digitally recorded transcripts were analyzed using grounded theory methodology. Strategies were identified and categorized. RESULTS: Strategies to support quality mealtimes were devised by families as they adapted to their evolving lives. General strategies such as living in the moment, as well as strategies specific to maintaining social engagement and continuity of mealtime activities were reported. CONCLUSIONS: In addition to nutritional benefit, family mealtimes provide important opportunities for persons with dementia and their family care partners to socially engage and continue meaningful roles. Strategies identified by participants provide a basis for further education and support to families living with dementia.

"It was like reading a detective novel": Using PAR to work together for culture change.

Participatory action research (PAR), with its focus on engagement and collaboration, is uniquely suited to enhancing culture change initiatives in dementia care. Yet, there is limited literature of its application to culture change approaches in care settings, and even less in dementia specific care contexts. To address these gaps in the literature, the purpose of this paper is to examine the complexities of a PAR project aimed at changing the culture of dementia care in two diverse dementia care settings, including a long term care (LTC) and community care setting. Drawing from data gathered throughout the PAR process, we unpack the challenges experienced by participants working together to guide culture change within their respective care settings. These challenges include: overextending selves through culture change participation; fluctuating group membership; feeling uncertainty, confusion and apprehension about the process; frustratingly slow process; and seeking diverse group representation in decision making. We also highlight the potential for appreciative inquiry (AI) to be integrated with PAR to guide a process whereby participants involved in culture change initiatives can develop strategies to mitigate challenges they experience. We view the challenges and strategies shared here as being constructive to would-be culture change agents and hope this paper will move others to consider the use of PAR when engaging in culture change initiatives.

An examination of family caregiver experiences during care transitions of older adults.

This study explored informal family caregiver experiences in supporting care transitions between hospital and home for medically complex older adults. Using a qualitative, grounded-theory approach, in-depth semi-structured interviews were conducted with community and resource case managers, as well as with informal caregivers of older hip-fracture and stroke patients, and of those recovering from hip replacement surgery. Six properties characterizing caregiver needs in successfully transitioning care between hospital and home were integrated into a theory addressing both a transitional care timeline and the emotional journey. The six properties were (1) assessment of unique family situation; (2) practical information, education, and training; (3) involvement in planning process; (4) agreement between formal and informal caregivers; (5) time to make arrangements in personal life; and (6) emotional readiness. This work will support research and clinical efforts to develop more well-informed and relevant interventions to most appropriately support patients and families during transitional care.

Transitions to long-term care: how do families living with dementia experience mealtimes after relocating?

Food and mealtimes play a central role in our lives and often hold great meaning. This study is a secondary analysis of a subset of data collected from a 6-year longitudinal qualitative study called Eating Together (ET), which sought to better understand the experiences around food and mealtimes for community dwelling persons with dementia (PWD) and their primary care partners (CP). Several PWD and, in some cases, their spousal CP, relocated to long-term care (LTC) during the conduct of the ET study. To understand how this relocation influenced the meaning of meals, a subset of those who experienced this transition were selected and analysis specific to this issue was undertaken. Seven families were included in this thematic inductive analysis. Findings revealed five themes related to the different mealtime experience in the LTC home, including systemizing the meal, adjusting to dining with others, holding on to home, evolving mealtime roles, and becoming "at home." Understanding how families adapt to commensal dining in LTC may be relevant to successful relocation. This work furthers this understanding and provides a basis for person-centered mealtime practices that promote adaptation.

The role of leisure within the dementia context.

While our understanding of the subjective experience of dementia is growing, leisure's role within that experience is less clear. This study, guided by hermeneutic phenomenology, aimed to understand the meaning and experience of leisure for persons living with early stage memory loss. Four participants with early stage dementia participated in interviews, participant observation, and photovoice, in which participants are given cameras and asked to take photos of their day to day lives (Wang, 1999). Data revealed that participants experienced daily life with dementia, including leisure, within a paradox of challenge and hope. They struggled with the changes they experienced as a result of dementia, such as muddled thinking, fluctuating abilities, draining energy, frightening awareness, and disquieting emotions. However, they found ways to tackle life with dementia, by reconciling life as it is, battling through by being proactive, living through relationships, being optimistic, and prolonging engagement in meaningful activity to live their lives with hope.