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.

'I feel more part of the world': Participatory action research to develop post-diagnostic dementia support.

Many people living with dementia are 'on the margins', not accessing services and support, despite policy and care advancements. The COVID-19 pandemic exacerbated this, with the closure of face-to-face support during lockdowns in the UK and globally. The aim of the 'Beyond the Margins' project was to develop, implement, and evaluate a face-face programme of support with, by and for people with direct experience of dementia who are on the margins of existing services and support. In March 2020 the project was interrupted by the outbreak of the COVID-19 pandemic and it changed to an online format. The three-phase participatory action research project included 40 people living with dementia, 26 care partners and 31 health and social care practitioners. A seven-week online personal development programme called Getting On with Life (GO) was developed, delivered, and evaluated. This paper focuses on the participatory approaches used to develop and implement the GO programme, and the resulting aspects of its approach to facilitation and content. Key features include the GO Programme's principles of providing a safe and a respectful space, and the programme's values of: Everyone who comes already knows things, can learn things and can teach things; Doing things 'with' each other, rather than 'for' or 'to' each other; Personalised goals-led by the needs of participants rather than an imposed agenda. A key finding was the importance of developing post-diagnostic programmes as a 'sandwich', providing a safe space for learning that is preceded by understanding pathways to access the programme and followed by explicit consideration of the next steps in increasing social engagement.

"I'm still the queen and I'm still on my throne ": Women's reflections on gender and living with dementia.

People with dementia have long been defined by the label of dementia, rather than by other aspects of their identities including gender. As a result, little research has focused on gender and dementia, particularly through the perspectives of those living with dementia. The purpose of this study was to explore the experiences and perspectives of women living with dementia. Specifically, we sought to understand how gender structured their experiences of receiving and coping with a diagnosis, services, and important relationships and supports. Utilizing a qualitative research approach, twenty-one women living with dementia participated in individual or group interviews. Women discussed the following aspects of gender and dementia: caregiver roles, perceptions of gender differences, the impact of dementia on families, and women's strength and resilience. The findings of this study indicate a clear need for further research to explore diversity and gendered experiences for those diagnosed with dementia.

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.

Barriers to Staff Involvement in End-of-Life Decision-Making for Long-Term Care Residents with Dementia.

ABSTRACTAlthough providing direct care to residents with dementia, long-term care (LTC) home staff of registered nurses', registered practical nurses', and personal support workers' involvement in end-of-life decision-making is rarely acknowledged. The purpose of this study was to examine barriers and facilitators to LTC home staff involvement in end-of-life decision-making for people with advanced dementia. We report on the barriers to staff involvement in decision-making. Using an interpretive descriptive design, four major barriers to staff involvement in decision-making were identified: (a) the predominance of a biomedical model of care; (b) a varied understanding of a palliative approach; (c) challenging relationships with families; and (d) a discomfort with discussing death. Findings suggest that the predominant biomedical model in LTC homes, while important, must be imbued with a philosophy that emphasizes relationships among residents with dementia, family and staff.

'That just breaks my heart': Moral Concerns of Direct Care Workers Providing Palliative Care in LTC Homes.

ABSTRACTThe literature on ethics in health care that explores the moral concerns of care providers typically focuses on registered health professionals and ethical dilemmas in acute and primary care. Far less attention has been paid to the long-term care (LTC) environment and non-registered, direct care workers. To address this gap, this research examined the moral concerns of personal support workers (PSWs) who provide direct care to residents. Data were collected during a 5-year participatory action research project to formalize palliative care programs in LTC homes. Eleven focus groups explored PSWs' experiences providing palliative care in LTC homes, their challenges and learning needs (n = 45). In-depth secondary analysis of these focus groups found that PSWs experienced moral dilemmas. Two main moral dilemmas were ensuring that residents don't die alone; and providing the appropriate care based on residents' wishes. Their organizational constraints coalesced around policies, hierarchy, time, and balancing residents' needs.

Stigma, discrimination and agency: Diagnostic disclosure as an everyday practice shaping social citizenship.

The importance of stigma in shaping the experiences of people living with dementia and challenging their social citizenship emerges repeatedly as a powerful and negative force. In a recent participatory action research (PAR) study focused on understanding what people with dementia need to know to live well, this link between stigma, discrimination and social citizenship emerged once again. A group of people living with dementia (n=8) met monthly for 16months to discuss their experiences and advise on the curriculum of a proposed self-management program. From the first introduction, stigma was identified as a defining feature of the experience of living well with dementia. This paper analyses this group's talk around stigma and discrimination, drawing attention to the critical role that diagnostic disclosure has in both positioning people with dementia in a stigmatizing way and, also, acting as a strategy of resistance that facilitates full social citizenship.

An Analysis of Journey Mapping to Create a Palliative Care Pathway in a Canadian First Nations Community: Implications for Service Integration and Policy Development.

Providing palliative care in Indigenous communities is of growing international interest. This study describes and analyzes a unique journey mapping process undertaken in a First Nations community in rural Canada. The goal of this participatory action research was to improve quality and access to palliative care at home by better integrating First Nations' health services and urban non-Indigenous health services. Four journey mapping workshops were conducted to create a care pathway which was implemented with 6 clients. Workshop data were analyzed for learnings and promising practices. A follow-up focus group, workshop, and health care provider surveys identified the perceived benefits as improved service integration, improved palliative care, relationship building, communication, and partnerships. It is concluded that journey mapping improves service integration and is a promising practice for other First Nations communities. The implications for creating new policy to support developing culturally appropriate palliative care programs and cross-jurisdictional integration between the federal and provincial health services are discussed. Future research is required using an Indigenous paradigm.

Looking Forward and Looking Back: Older Adults' Views of the Impacts of Stopping Driving.

This project aimed to identify the impact of driving cessation from the perspectives of older drivers and former drivers. Participants included 17 adults aged 65-88 years residing in a city in Northwestern Ontario, Canada. Using a semi-structured interview guide (with questions regarding mobility, personal impact, impact on others, engagement with life, and finances), two focus groups were held with nine current drivers, and one-on-one interviews were held with six former drivers and two current drivers. Two themes emerged concerning stopping driving. The first theme included discussions on experiencing lifestyle changes, relationship impacts, and emotional impacts. The second, the adjustment to stopping driving, included practical adaptations, and emotional responses such as appreciation, resistance, acceptance, and being positive. Although the impacts of stopping driving were substantial, there were few discrepancies between what was anticipated and what was experienced. This information could assist with developing interventions to ease the transition to former-driver status.

Creating space for citizenship: The impact of group structure on validating the voices of people with dementia.

Recently, there has been increasing attention given to finding ways to help people diagnosed with dementia 'live well' with their condition. Frequently however, the attention has been placed on the family care partner as the foundation for creating a context that supports the person with dementia to live well. A recent participatory action research (PAR) study highlighted the importance of beginning to challenge some of the assumptions around how best to include family, especially within a context of supporting citizenship. Three advisory groups consisting of 20 people with dementia, 13 care partners, and three service providers, were set up in three locations across Canada to help develop a self-management program for people with dementia. The hubs met monthly for up to two years. One of the topics that emerged as extremely important to consider in the structuring of the program revolved around whether or not these groups should be segregated to include only people with dementia. A thematic analysis of these ongoing discussions coalesced around four inter-related themes: creating safe spaces; maintaining voice and being heard; managing the balancing act; and the importance of solidarity Underpinning these discussions was the fifth theme, recognition that 'one size doesn't fit all'. Overall an important finding was that the presence of family care-partners could have unintended consequences in relation to creating the space for active citizenship to occur in small groups of people with dementia although it could also offer some opportunities. The involvement of care partners in groups with people with dementia is clearly one that is complex without an obvious answer and dependent on a variety of factors to inform a solution, which can and should be questioned and revisited.

Three Values That Should Underlie Community-Based Dementia Care Strategies.

To guide action towards a community-based dementia care strategy, Morton-Chang et al. provide the following three key strategic pillars: putting people with dementia first, supporting informal caregivers and enabling local communities to support people with dementia. While, in principle we agree with these pillars, the ways in which we interpret and implement them differ. We propose three values that should underlie any discussion of dementia policy, strategy and change and that place people with dementia at the heart of these discussions: that of the rights of people with dementia, of diversity and equity, and inclusion.

From social network to safety net: Dementia-friendly communities in rural northern Ontario.

Dementia-friendly communities, as communities that enable people with dementia to remain involved and active and have control over their lives for as long as possible, centrally involve social support and social networks for people living with dementia. The purpose of this research was to explore and understand the context of dementia in rural northern communities in Ontario with an emphasis on understanding how dementia friendly the communities were. Using qualitative methods, interviews were conducted with a total of 71 participants, including 37 health service providers, 15 care partners, 2 people living with dementia and 17 other community members such as local business owners, volunteers, local leaders, friends and neighbours. The strong social networks and informal social support that were available to people living with dementia, and the strong commitment by community members, families and health care providers to support people with dementia, were considered a significant asset to the community. A culture of care and looking out for each other contributed to the social support provided. In particular, the familiarity with others provided a supportive community environment. People with dementia were looked out for by community members, and continued to remain connected in their communities. The social support provided in these communities demonstrated that although fragile, this type of support offered somewhat of a safety net for individuals living with dementia. This work provides important insights into the landscape of dementia in rural northern Ontario communities, and the strong social supports that sustain people with dementia remaining in the communities.

From beginning to end: perspectives of the dementia journey in northern Ontario.

Research on dementia care continues to develop, yet little attention has been given to the dementia experience in rural, northern communities. This study explored the dementia journey through the viewpoints of health service providers, caregivers, community members, and people living with dementia. The findings highlight the complexity of dementia awareness and understanding. Sound awareness and knowledge of dementia itself, the community services available, as well as of the perspectives of individuals living with dementia and care partners specifically in rural, northern Ontario are fundamental to quality care and support of individuals with dementia. Practical service implications and the need for greater developments with respect to the awareness and understanding of dementia in rural, northern communities are discussed.

'You can't turn back the clock': conceptualizing time after institutionalization.

ABSTRACTTime is a phenomenon that is often taken for granted. In gerontology, time is often equated with chronological or linear time, which thereby causes time to be defined as chronological age. With this paper, my purpose is to illuminate further understandings of time and how the passage of time is experienced in old age, particularly in the context of a move to a long-term care institution. Towards that end, I describe a case study of a gentleman coming to live in a long-term care facility. In this case study, time was perceived as an element outside day-to-day experience that structured daily life. Specific dimensions of temporality are evident, including biographical time, embodied time, and embedded time (including institutional time). These dimensions of time provide further understanding of the experiences of age and institutionalization.

Life around ... : staff's perceptions of residents' adjustment into long-term care.

The move to a long-term care facility can be particularly traumatic for new residents. Staff can make this transition easier in a number of ways. However, the staff's perceptions of the transition process and residents' experiences will play a significant part in determining the type of support that is given residents during the transition. The purpose of this research was to examine the staff's perceptions of a person's coming to live in a long-term care environment. Using in-depth interviews with staff from one long-term care facility, three main themes emerged that encompassed descriptions of residents' lives. Essentially, the staff described how residents learned to live a life involving various factors in three main categories--life around losses, life around the institution, and life around the body.

Care provider perspectives on end-of-life care in long-term-care homes: implications for whole-person and palliative care.

This study holistically explores the experience of dying and end-of-life care for older persons with dementia in long-term care (LTC) from the perspective of care providers. Using a focused ethnography methodology, seven researchers interviewed LTC staff, residents' families, volunteers, management staff, and spiritual advisers/clergy over a five-day period. Research was guided by two key questions: What is the dying experience of people living in LTC from the perspective of different care providers? and, What are the salient issues in providing palliative care for elderly people dying in LTC? Based on a thematic analysis of verbatim data, three common themes were identified: tension between completing job tasks on time and "being there" for residents; the importance of family-like bonds between front-line staff and residents; and the importance of communication among staff and between staff and residents and their families at the end of life. Findings are discussed in relation to their implications for policies and practices that can support whole-person care and ultimately a good death for residents of LTC facilities.

The nature of relationships in alternative dementia care environments.

The purpose of this exploratory study was to examine the experiences of older adults with dementia while they were in long-term care and while they were in a summer-camp setting. Participant observation and interviews took place in both settings to gain an understanding of the experiences of seven residents of the long-term care facility. In the participants' experiences in the two contrasting environments, two types of relationships were evident-functional and supportive. Differing strategies were employed by residents within these two types of relationships. Notably, in supportive relationships, participants used humour and reminiscing in ways that reflected the depth of the relationship. At summer camp, in a more open and less constrained environment, relationships were dramatically altered and included elements of equality; personal interactions; and attention, reciprocity, and trust.

The experiences of place: veterans with dementia making meaning of their environments.

Little research has examined how older veterans view the long-term care facility as place and how they make meaning of their experiences within specific places. This study examined seven older veterans' meanings of place within the cognitive support unit of a veteran's hospital and in a summer camp setting. In the facility, the environment was interpreted as restrictive. At camp, the environment was interpreted as freeing. Each of the environments was experienced within the horizons of meaning of residents' lives [Gubrium, J.F., 1993. Speaking of Life: Horizons of Meaning for Nursing Home Residents. Aldine de Gruyter, Hawthorne, NY.]. What was evident here was that the experiences in both places, both in the moment and through horizons of meaning, contributed to how residents created a sense of place in these two distinct environments.