"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.

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.

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.

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.

'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.

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.