Co-design of a digital app "WhatMatters" to support person-centred care: A critical reflection.

BACKGROUND: People with dementia often do not receive optimal person-centred care (PCC) in care settings. Family members can play a vital role as care partners to support the person with dementia with their psychosocial needs. Participatory research that includes the perspectives of those with lived experience is essential for developing high-quality dementia care and practices. OBJECTIVE: Throughout 2021-2022, a mobile app, called WhatMatters, was co-developed to provide easy-to-access and personalised support for people with dementia in hospitals and long-term care homes, with input from patients/residents, family partners and healthcare staff. This article discusses and critically reflects on the experiences of patients/residents, family partners, and healthcare staff involved in the co-design process. METHODS: For the app development, we applied a participatory co-design approach, guided by a User Experience (UX) model. The process involved co-design workshops and user testing sessions with users (patients/residents, family partners, healthcare staff) to co-develop the WhatMatters prototype. We also conducted focus groups and one on one interviews with staff and caregiver participants to explore their experiences. Our research team, which also included patient partners, took part in regular team meetings during the app's development, where we discussed and reflected on the co-design process. Reflexive thematic analysis was performed to identify themes that represent the challenges and rewarding experiences of the users involved in the co-design process, which guided our overall reflective process. FINDINGS: Our reflective analysis identified five themes (1) clarifying the co-design process, (2) ensuring inclusive collaborations of various users, and (3) supporting expression of emotion in a virtual environment, (4) feeling a sense of achievement and (5) feeling valued. IMPLICATIONS: WhatMatters offers potential for providing personally relevant and engaging resources in dementia care. Including the voices of relevant users is crucial to ensure meaningful benefits for patients/residents. We offer insights and lessons learned about the co-design process, and explore the challenges of involving people with lived experiences of dementia in co-design work, particularly during the pandemic.

Making space at the table: Engaging participation of people with dementia in community development.

OBJECTIVES: The Building Capacity Project is an asset-based community development initiative that aims to reduce stigma and promote social inclusion for people with dementia. Using a community-based participatory approach, we conducted research to examine the relational patterns and participatory practices within and across project sites in two different regions of Canada (Vancouver and Thunder Bay). METHODS: Five focus groups and five individual interviews were conducted with team members and community partners (n = 29) and analysed for themes. RESULTS: The overarching theme of Making Space at the Table explains how the participation of people with dementia has served both as a value and a practice shaping the relational work throughout the project. Three sub-themes include: Maintaining a common foundation; Creating communication pathways; and Fostering personal connections. CONCLUSIONS: Together, these findings show how community development can support the meaningful participation of people with dementia in their communities through processes of collaboration that focus on individual and collective strengths, that allow time for the work to unfold, and for building relationships that foster trust and respect for diversity.

Participatory action research: An exploration from a Freirean perspective of research involving people with dementia.

BACKGROUND: Researchers are increasingly being called upon to involve people with dementia in research that pertains to them. Participatory Action Research (PAR) has been one of the approaches that has been utilized to do this. How people understand and apply the ideas behind this approach however has often been atheoretical and diverse. This has implications for how purpose, power, voice and agency are conceived and actualized. OBJECTIVES: This paper will examine how theoretical construction of PAR can inform the process of meaningfully involving people living with dementia in research. Specifically, drawing on the work of Paulo Freire, this paper will articulate a way of conceptualizing PAR that is explicitly critical and then demonstrate how these ideas informed a PAR study focused on addressing stigma and discrimination with people living with dementia. CONCLUSION: The purpose of the paper is to engage researchers and people with lived expertise in critical reflection of what it actually means to involve people with dementia in research.

Dementia Without Borders: Building community connections to reduce stigma and foster inclusion.

Around the world people with dementia face stigma and social exclusion. An interdisciplinary team from Seattle, Washington, and Vancouver, British Columbia led a collaborative project developing cross-border community partnerships to increase awareness and reduce stigma, promote social participation of people with dementia, and enhance their well-being. The work was organized around three themes - citizen engagement, social entrepreneurship, and creative expression - and involved regular meetings so researchers, community providers, and people with dementia and care partners could know each other better. Dementia Without Borders was organized as an end-of-project celebration, a public festival bringing together community members from both countries to share what the team had learned from each together. The event took place at the Peace Arch, an international park straddling the border between Washington and British Columbia. Over 140 people arrived on their respective sides, created banners, and walked together to the Peace Arch to meet and exchange gifts with those coming from the other country. A picnic shelter was used to display art created by people with dementia and outdoor tables allowed everyone to eat together and listen to poetry readings and musical performances. Feedback was overwhelmingly positive with many expressing a sense of hope and belonging. This project has leveraged the symbolic power of an international border to generate new ideas about fostering social inclusion and reducing stigma for people with dementia. It shows the importance of place and history, building relationships on trust and participation, and being flexible and responsive to opportunities for social innovation.

Waiting for home: The experience of delayed discharge for people with dementia.

INTRODUCTION: Individuals who remain in hospital once their health has stabilised experience delayed discharge. This often occurs for people with dementia when care needs exceed what can be managed at home. There is little research that takes into account the experience and needs of these patients. This Interpretive Description (ID) study, theoretically grounded in personhood and social citizenship perspectives, focused on the perspectives of people with dementia experiencing delayed discharge to address this gap in research and to better understand how nursing care can be improved for them. METHODS: Twenty-one individuals participated in this study: eight patient participants experiencing delayed discharge and living with dementia, six family members, and seven nurses. Data collection methods primarily included participant observations, totalling 100 h of observations. Fourteen semi-structured interviews were also conducted with family members and nurses and with one patient participant. Informal conversations were undertaken with patient participants who did not take part in interviews. RESULTS: Thematic analysis resulted in three main themes, encapsulating the patients' experiences: (1) Living and Waiting; (2) Distress and Behaviours; and (3) Looking Beyond the Designation. Findings are discussed in the context of the passive nature of delayed discharge care, the need for person-centred care, and prevailing discourses around the behavioural symptoms of dementia. CONCLUSION: Implications for nursing practice include the need to acknowledge and foster the abilities of people with dementia. The behaviour narrative and labelling prevalent in hospitals must also be challenged. Lastly, nurses need to recognise the significant transition that is the delayed discharge experience, especially for people with dementia. This study advocates for person-centred and inclusive nursing care, where ongoing needs are recognised and addressed, particularly for people with dementia experiencing delayed discharge, who are waiting for home.

Unintended Consequences of Pandemic Management Strategies on Residents and Family in One Long-term Care Home in British Columbia: A Patient-Supported Qualitative Study.

Background and Objectives: In March 2020, pandemic management strategies were mandated across long-term care homes in British Columbia, Canada, to control the effects of COVID-19. This study describes and contextualizes the impact of visitation, infection prevention and control, and staffing strategies on the perceived health and well-being of residents and families. Research Design and Methods: This interpretive description study was part of a larger mixed-methods study at a publicly funded not-for-profit long-term care home in British Columbia, Canada. Eleven family members and 10 residents were interviewed between October and December 2020, and resident and family partners participated in a steering committee throughout all stages of the research. Findings: Early pandemic management strategies had an adverse impact on the perceived health and well-being of families and residents. Visitation restrictions eliminated care routinely provided by families and prevented in-person communication between residents, families, and care providers. Other infection prevention and control strategies isolated residents; group enrichment programs were stopped, and lockdowns created a perception of incarceration. Donning and doffing personal protective equipment took time away from staff-resident interactions and the single-site order reduced staff numbers, placing additional time restraints on residents' care. Discussion and Implications: Unintended adverse consequences of pandemic management strategies demonstrate the risks of creating policies based on a medicalized definition of health. Clear lines of communication are vital to increase a sense of control for families and residents. Elimination of care provided by families and paid companions exposed a gap in Canada's public long-term care system. This care gap raises concerns about equitable care access for residents without families or financial means to pay for additional care.

Conceptualizing citizenship in dementia: A scoping review of the literature.

Citizenship has provided an important conceptual framework in dementia research and practice over the past fifteen years. To date, there has been no attempt to synthesize the multiple perspectives that have arisen in this literature. The purpose of this paper is to explore, reflect on, and contrast, the key concepts and trends in the citizenship discourse as it relates to people with dementia. Using a scoping review methodology, forty-nine articles were identified for review. Despite the use of different descriptors, thematic analysis revealed four core themes underpinning citizenship discourse: 1) the relationality of citizenship; 2) facilitated agency and autonomy; 3) attention to stigma, discrimination and exclusion; and 4) recognition of the possibilities of identity and growth. Overall, this scoping review found a major emphasis on expanding definitions of agency and autonomy to render citizenship unconditional and inclusive of the diverse life experiences of people living with dementia. Notably, there is recognition that a more intersectional lens for embedding the subjective experience within a broader socio-political context is needed. Whilst the adoption of a citizenship lens in dementia research and practice has had real-world implications for policy and research, its exploration and use continue to be led by academics, highlighting the importance that future research involve input form people with dementia.

Creating Dementia-Friendly Communities for Social Inclusion: A Scoping Review.

Aims: This scoping review explores key strategies of creating inclusive dementia-friendly communities that support people with dementia and their informal caregiver. Background: Social exclusion is commonly reported by people with dementia. Dementia-friendly community has emerged as an idea with potential to contribute to cultivating social inclusion. Methods: This scoping review follows the Joanna Briggs Institute scoping review methodology and took place between April and September 2020. The review included a three-step search strategy: (1) identifying keywords from CINAHL and AgeLine; (2) conducting a second search using all identified keywords and index terms across selected databases (CINAHL, AgeLine, MEDLINE, PsycINFO, Web of Science, ProQuest, and Google); and (3) hand-searching the reference lists of all included articles and reports for additional studies. Results: Twenty-nine papers were included in the review. Content analysis identified strategies for creating dementia-friendly communities: (a) active involvement of people with dementia and caregivers (b) inclusive environmental design; (c) public education to reduce stigma and raise awareness; and (d) customized strategies informed by theory. Conclusion: This scoping review provides an overview of current evidence on strategies supporting dementia-friendly communities for social inclusion. Future efforts should apply implementation science theories to inform strategies for education, practice, policy and future research.

Creating dementia-friendly and inclusive communities for social inclusion: a scoping review protocol.

INTRODUCTION: The number of people with dementia is increasing worldwide, with the majority of people with dementia living at home in the community. WHO calls for global action on the public health response to dementia. Social exclusion is commonly reported by people with dementia and their families. Dementia-friendly and inclusive community has emerged as an idea that holds potential to contribute to the mitigation of social exclusion. The objective of the scoping review is to answer two questions: What social inclusion strategies that have been reported in the dementia-friendly and inclusive communities' literature? What strategies for developing dementia-friendly and inclusive communities that have shown to improve social inclusion? METHODS AND ANALYSIS: This scoping review will follow the Joanna Briggs Institute scoping review methodology and will take place between April and September 2020. The proposed review will consider studies based in community settings with participants living at home with early to late stages of dementia and their families. This includes a three-step search strategy: (1) to identify keywords from MEDLINE and CINAHL; (2) to conduct a second search using all identified keywords and index terms across selected databases (MEDLINE, CINAHL, AgeLine, PsycINFO, Web of Science, ProQuest and Google) and (3) to handsearch the reference lists of all included articles and reports for additional studies. Further, we will search Google for grey literature on published organisational reports. Two researchers will screen titles and abstracts independently and then assess the full text of selected citations against inclusion criteria. Extracted data will be presented in a narrative accompanied by tables that reflect the objective of the review. ETHICS AND DISSEMINATION: As the methodology of this study consists of collecting data from publicly available articles, it does not require ethics approval. This scoping review provides an overview of current evidence on strategies that support dementia-friendly and inclusive communities for social inclusion. The findings will offer insights to inform strategies for education, practice, policy and future research. We will share the scoping review results through conference presentations and an open-access publication in a peer-reviewed journal.

The Contribution of Documentation Systems to How Nurses Understand Older People's Cognitive Function in Hospital.

Nurses are central to the care of older people in hospital. One issue of particular importance to the experience and outcomes of hospitalized older people is their cognitive function. This article reports findings from a focused ethnographic study demonstrating how documentation systems-documents and the social processes surrounding their use-contribute to how nurses come to understand the cognitive function of hospitalized older people. We found that documents contribute to nurses' understanding by serving as a frame of reference, by directing assessments, and by constraining communication. The findings highlight the potential to improve the documents nurses use in hospitals.

Family members' experiences and management of resident-to-resident abuse in long-term residential care.

OBJECTIVES: Resident-to-resident (RRA) abuse is increasingly recognized as a significant problem in long-term residential care.Families have a constant presence in this setting, yet their inclusion in research about RRA is minimal. The purpose of this study was to examine family members' experiences and management of RRA. METHODS: The methodology was critical ethnography.Twelve family members participated in in-depth interviews and 56 hours of participant observation were conducted. Data were analyzed thematically. RESULTS: The main themes illuminate families' experiences of RRA in a context that largely normalizes it.In the absence of formal supports, families developed a range of management strategies, ranging from passive to active intervention.Organizational factors, such as staffing levels and mix, and the physical environment also contributed to RRA. DISCUSSION: Families are actively managing RRA in long-term residential care. Policies and programs, including educational supports, should be developed to validate and support families.

Engaging Older Men in Physical Activity: Implications for Health Promotion Practice.

According to Health Canada (2016), only about 11% of older men meet recommended guidelines for physical activity, and participation decreases as men age. This places men at considerable risk of poor health, including an array of chronic diseases. A demographic shift toward a greater population of less healthy older men would substantially challenge an already beleaguered health-care system. One strategy to alter this trajectory might be gender-sensitized community-based physical activity. Therefore, a qualitative study was conducted to enhance understanding of community-dwelling older men's day-to-day experiences with physical activity. Four men over age 65 participated in a semistructured interview, three walk-along interviews, and a photovoice project. An interpretive descriptive approach to data analysis was used to identify three key themes related to men's experiences with physical activity: (a) "The things I've always done," (b) "Out and About," and (c) "You do need the group atmosphere at times." This research extends the knowledge base around intersections among older men, physical activity, and masculinities. The findings provide a glimpse of the diversity of older men and the need for physical activity programs that are unique to individual preferences and capacities. The findings are not generalized to all men but the learnings from this research may be of value to those who design programs for older men in similar contexts. Future studies might address implementation with a larger sample of older men who reside in a broad range of geographic locations and of different ethnicities.

Using Video-Reflexive Ethnography to Engage Hospital Staff to Improve Dementia Care.

In this article, we discuss how video-reflexive ethnography may be useful in engaging staff to improve dementia care in a hospital medical unit. Seven patients with dementia were involved in the production of patient-story videos, and fifty members of staff (nurses, physicians, and allied health practitioners) participated in video-reflexive groups. We identified five substantial themes to describe how video-reflexive groups might contribute to enacting person-centered care for improving dementia care: (a) seeing through patients' eyes, (b) seeing normal strange and surprised, (c) seeing inside and between, (d) seeing with others inspires actions, and (e) seeing with the team builds a culture of learning. Our findings suggest that video reflexivity is not only useful for staff engagement but also effective in enhancing team capacity to enact person-centered care in the hospital setting.

"Little things matter!" Exploring the perspectives of patients with dementia about the hospital environment.

BACKGROUND: Recognising demographic changes and importance of the environment in influencing the care experience of patients with dementia, there is a need for developing the knowledge base to improve hospital environments. Involving patients in the development of the hospital environment can be a way to create more responsive services. To date, few studies have involved the direct voice of patients with dementia about their experiences of the hospital environment. DESIGN AND METHOD: Using an action research approach, we worked with patients with dementia and a team of interdisciplinary staff on a medical unit to improve dementia care. The insights provided by patients with dementia in the early phase shaped actions undertaken at the later stage to develop person-centred care within a medical ward. We used methods including go-along interviews, video recording and participant observation to enable rich data generation. AIM: This study explores the perspectives of patients with dementia about the hospital environment. RESULTS: The participants indicated that a supportive hospital environment would need to be a place of enabling independence, a place of safety, a place of supporting social interactions and a place of respect. CONCLUSIONS: Patient participants persuasively articulated the supportive and unsupportive elements in the environment that affected their well-being and care experiences. They provided useful insights and pointed out practical solutions for improvement. Action research offers patients not only opportunities to voice their opinion, but also possibilities to contribute to hospital service development. IMPLICATIONS FOR PRACTICE: This is the first study that demonstrates the possibility of using go-along interviews and videoing with patients with dementia staying in a hospital for environmental redesign. Researchers, hospital leaders and designers should further explore strategies to best support the involvement of patients with dementia in design and redesign of hospital environments.

Aging Together: Caring Relations in Families of Adults With Intellectual Disabilities.

Purpose of the Study: To examine the dynamics of caring relations in older families that include an adult with Intellectual Disabilities (ID). To date, there has been very little research exploring the experiences of aging families of community-dwelling adults with ID. Design and Methods: An exploratory, qualitative study was conducted in British Columbia, Canada. Eight participants were recruited through purposive sampling. In-depth, semistructured interviews were conducted to explore the experience of aging concurrently with a community-dwelling relative with ID. Data were analyzed using a thematic approach. Results: Three main themes emerged: (a) Recognizing the Changes of Aging, (b) Strengthening Connections, and (c) Planning for the Future. Implications: Aging concurrently with a community-dwelling relative with ID is a unique experience for older adults and challenges traditional views of familial caring relations. These relationships are characterized by evolving patterns of care and exchange. There is also a sense of urgency to securing future care arrangements for the adult relative with ID. Advanced care-planning is complicated by the adult with ID' understanding of death and dying. Family caregiving policies and practices that take into account the complexities of these relationships are needed.

Practice Change Interventions in Long-Term Care Facilities: What Works, and Why?

Over the past three decades, there has been a notable increase in studies of practice change interventions in long-term care (LTC) settings. This review, based on a modified realist approach, addresses the following questions: What practice change intervention characteristics work? And, in what circumstances do they work and why? A modified realist approach was applied to identify and explain the interactions among context, mechanism, and outcome. We searched electronic databases and published literature for empirical studies of practice change interventions that (a) were conducted in LTC settings, (b) involved formal care staff members, and (c) reported a formal evaluation. Ninety-four articles met the inclusion criteria. Interventions that included only predisposing factors were least likely to be effective. Interventions that included reinforcing factors were most likely to produce sustained outcomes. We concluded that interventions aimed at practice change in LTC settings should include feasible and effective enabling and reinforcing factors.

Walking in the neighbourhood: Performing social citizenship in dementia.

The proliferation of community-based activity programs for people with dementia suggests an appetite for new approaches to support quality of life and well-being for this population. Such groups also have potential to promote social citizenship, although this remains poorly understood. This article presents findings from a subset of data from an ethnographic study of a community-based program for people with young onset dementia; it focuses on Paul's Club and the experiences of 12-15 members who are physically healthy, with moderate to moderately severe dementia. Analysis suggests how aspects of social citizenship are constructed and revealed through the Club's everyday practice of walking in the neighbourhood. Three major themes emerged: Keeping the focus off dementia; Creating a place of belonging; and Claiming a place in the community How the group balances consideration of members' vulnerability and agency is discussed, and the article concludes with implications for future practice and research initiatives.

The Influence of Organizational Systems on Information Exchange in Long-Term Care Facilities: An Institutional Ethnography.

Person-centered care is heavily dependent on effective information exchange among health care team members. We explored the organizational systems that influence resident care attendants' (RCAs) access to care information in long-term care (LTC) settings. We conducted an institutional ethnography in three LTC facilities. Investigative methods included naturalistic observations, in-depth interviews, and textual analysis. Practical access to texts containing individualized care-related information (e.g., care plans) was dependent on job classification. Regulated health care professionals accessed these texts daily. RCAs lacked practical access to these texts and primarily received and shared information orally. Microsystems of care, based on information exchange formats, emerged. Organizational systems mandated written exchange of information and did not formally support an oral exchange. Thus, oral information exchanges were largely dependent on the quality of workplace relationships. Formal systems are needed to support structured oral information exchange within and between the microsystems of care found in LTC.

The impact of oral health on body image and social interactions among elders in long-term care.

OBJECTIVE: The objective of this study was to explore how social interactions and body image are influenced by perceived oral health among older people who live in long-term care facilities. BACKGROUND: Social interactions among frail elders in long-term care (LTC) facilities are limited, but to what extent body image and oral health influence their social relations is poorly understood. A positive body image and the perception of adequate oral health are linked to increased social contacts, as well as improved health and well-being irrespective of age. However, as frailty increases, it is unclear whether appearance and oral health priorities remain stable. MATERIALS AND METHODS: Open-ended interviews were conducted with a purposefully selected group of cognitively intact, older men and women who exhibited varying degrees of frailty, social engagement and oral health conditions and lived in one of seven long-term care facilities. The interviews were analysed using a constant comparative technique, and a second interview with participants checked the trustworthiness of the analysis. RESULTS: Three major categories were expressed by the participants: (1) My mouth is fine; (2) It depends; and (3) Not that important. Within each category, there were several contributing and influencing factors. CONCLUSIONS: Social interactions among residents in LTC may be negatively impacted by poor oral health, but only if other personal and social issues are less bothersome than conditions with the mouth.

Maximizing Theoretical Contributions of Participant Observation While Managing Challenges.

Participant observation (PO) is an important method of data collection used in a variety of research methodologies. PO can inform theory development by providing understanding of participants' behaviors and the contexts that influence their behaviors. Because theory development is important in grounded theory studies, we emphasize theoretical contributions of PO while interrogating the challenges of using PO, in particular, attending to informed consent. We use the exemplar of a mid-range theory about nursing practice with hospitalized older adults to highlight contributions of PO to category development. While acknowledging theoretical contributions, we explore challenges entailed in observations where consenting participants interact with vulnerable patients and a changing cast of health care professionals in dynamic contexts. Reflexivity about interactions with vulnerable individuals, as well as other actions to avoid compromising voluntary consent, enhances contributions of PO.