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.

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).

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.

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.

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.

Adjusting to mealtime change within the context of dementia.

Little is known about how persons with dementia and their care partners respond to mealtime changes that occur throughout the dementia journey. By interviewing 27 persons living with dementia and their 28 care partners, we explored the meaning and experience of change surrounding mealtimes. Participants adjusted to mealtime change by adapting to an evolving life, as a result of a dynamic process of becoming aware of change, attaching meaning to change, and responding to change. Seminal events compounded by a sense of things being different triggered awareness of mealtime changes. Meaning was attached to mealtime changes, observed through emotions experienced and diverse strategies developed to support mealtime values. Responding to change ranged from resisting, to being in a holding pattern, to transforming and adapting. Understanding how individuals and families adjust to mealtime changes, and the strategies they develop, provides critical insights for supporting families throughout the dementia journey.

Ways that families engage with staff in long-term care facilities.

The purpose of this qualitative study was to explore styles of engagement used by families with staff in long-term care facilities. Data were gathered through personal interviews with 35 family members. Five styles of engagement were identified: positive, negative, peremptory, cautious, and limited. Factors associated with these different styles were also identified. Implications for practice are discussed.

Changes in family involvement following a relative's move to a long-term care facility.

The purpose of this study was to examine changes in family involvement following a relative's move to a long-term care facility as well as factors associated with these changes. Qualitative data, using in-depth, active interviews were gathered from 35 family members at two points in time following a relative's move to a facility. Findings showed some changes in contact that were related to personal, social, institutional, and health conditions. Occasionally, new types of care were provided; more often care was re-balanced or expressed in alternative ways. The majority of participants did not view themselves as caregivers, a perception that remained stable over time. Consistent with continuity theory, families, in most cases, tended to seek ways to maintain consistency in their roles as family members and carers, particularly in the first year or so after placement. Nonetheless, facility staff should be aware of the factors that might influence changes over time in family caregiving roles and offer support to families dealing with these issues.

Understanding the experience of moving a loved one to a long-term care facility:family members' perspectives.

This project was designed to develop an understanding of family members' experiences of moving a loved one to a long-term care facility and to identify ways in which facilities might help ease this process. Twenty-one semi-structured interviews were conducted with family members who had recently moved a relative into one of three long-term care facilities in Southern Ontario, Canada. Several factors appeared to contribute to the overall experience of the move to long-term care and either served to impede or facilitate a positive transition for families. These factors included: the experience during the waiting process, preparation for the move, ease of the actual move, control over decisions, communication throughout the process, support from others, and family and resident perceptions and attitudes towards the move. Easing the difficult aspects of moving a loved one to a long-term care setting can be facilitated with better preparation and support from facilities and community services.