Conceptualizing access to community-based supports from the perspectives of people living with young onset dementia, family members and providers.

People living with young onset dementia and their families have significant support needs, but experience difficulties accessing services. This study explored the process of accessing community-based services drawing on semi-structured interviews with people living with dementia, family members and providers in Winnipeg, Canada. Data analysis involved a combination of inductive coding and theoretical analysis using the candidacy framework as a conceptual lens. Forced to navigate services that do not recognize people with young onset dementia as a user group, participants experienced ongoing barriers that generated continuous work and stress for families. Access was constrained by information resources geared towards older adults and restrictive eligibility criteria that constructed people with young onset dementia as "not impaired enough" or "too impaired". At the organizational level, fragmentation and underrepresentation of young onset dementia diminished access. Our findings underscore the need for continuous, coordinated supports alongside broader representation of young onset dementia within research, policy, and practice. We conclude with a discussion of how the candidacy theory could be extended to account for the social and political status of user groups.

Conceptualizing violence in nursing home policy: A citizenship perspective.

Violence is a pervasive, yet often hidden, issue within nursing homes, affecting residents, family members and care workers. Critical exploration of embedded understandings of violence within public policies can provide important insights into how violence is viewed and addressed in nursing home environments as well as the implications of violence for different groups and alternative ways of framing and addressing violence. To this end, this study explored how violence is conceptualized within 45 nursing home policy texts from two Canadian provinces - Manitoba and Nova Scotia. Using a critical policy analysis approach and a citizenship lens, we identified four dominant constructions of policy 'targets' associated with specific rights and conceptualizations of violence. Policy documents construct residents as either vulnerable and in need of protection or as challenging and requiring behavior management. Care workers are constructed as either clinical risk managers, responsible for mitigating violence, or as employees with rights and responsibilities. Overall, violence prevention policies governing nursing homes are fragmented and convey conflicting conceptualizations of violence, associated with divergent rights and responsibilities. Our findings highlight the need for comprehensive violence prevention policies that affirm the rights of nursing home residents and care workers alike.

Age, Dementia, and Diagnostic Candidacy: Examining the Diagnosis of Young Onset Dementia Using the Candidacy Framework.

People living with young onset dementia face significant barriers to diagnosis, resulting in delays, misdiagnoses, and treatment gaps. We examined the process of accessing and delivering a diagnosis of young onset dementia using the candidacy framework as a conceptual lens. Semi-structured interviews were conducted with six people living with dementia, 14 family members, and 16 providers in a western Canadian city. Participants' accounts revealed the diagnosis of young onset dementia as a negotiated process involving patients, family members, and health professionals. Assumptions about age and dementia affected how participants interpreted their symptoms, how they presented to services, and how they, in turn, were perceived by providers. At the organizational level, age-restrictions, fragmentation, and unclear referral pathways further complicated the diagnostic process. Our findings lend support to the growing call for specialist young onset dementia care and point toward several recommendations to develop more age-inclusive diagnostic services.

Carers as System Navigators: Exploring Sources, Processes and Outcomes of Structural Burden.

BACKGROUND AND OBJECTIVES: Structural features of formal care systems influence the amount, difficulty, and complexity of what carers do as they interface with those systems. In this study, we explored how carers navigate health and social care systems, and their experiences of structural burden related to features such as complexity and fragmentation. RESEARCH DESIGN AND METHODS: This qualitative descriptive inquiry drew on data from in-person interviews with 32 carers of older adults, which were analyzed first using inductive thematic analysis and then using structural burden as a conceptual lens. RESULTS: Participant accounts revealed how navigating formal systems on behalf of older adult family members can exact considerable demands on carers in terms of time investment and emotional energy. In this way, care systems exacerbate the stress and structural burden experienced by carers, even when formal services alleviate other forms of carer burden. DISCUSSION AND IMPLICATIONS: Our findings contribute to knowledge of how the structural context of formal services shapes carer experiences and outcomes. To promote equity and prevent burden, system navigation work should be considered as a public, structural issue, rather than an individual-level problem of skills and learning.

Safe and Inclusive Research Practices for Qualitative Research Involving People with Dementia: A Review of Key Issues and Strategies.

AIM: Developing strategies to ensure the safe participation of people with dementia in research is critical to support their wider inclusion in research and to advance knowledge in the areas of dementia policy and practice. OBJECTIVES: This literature review synthesizes and critically appraises different approaches to promote the safe participation of people with dementia in qualitative research. METHODS: Two databases were searched for articles that discuss the methodological or ethical aspects of qualitative research involving people with dementia. We did not focus on informed consent or ethical review processes as these have been reviewed elsewhere. FINDINGS: Key issues that impact participant safety include: language, gatekeepers, the research relationship, communication, dealing with distress, knowledge dissemination, and researcher skills. CONCLUSION: By synthesizing different approaches to safety and highlighting areas of debate, we hope to advance discussion and to contribute to the development of inclusive research methods.

Comparing the Overall Health, Stress, and Characteristics of Canadians with Early-Onset and Late-Onset Dementia.

OBJECTIVE: Dementia is increasingly recognized as a public health priority, but little is known about persons with early-onset dementia (EOD). The objectives of this article are (a) to compare the socio-demographic and health characteristics of people with EOD and late-onset dementia (LOD) and (b) to examine the relationships between EOD and overall health and life stress. METHOD: Data were from the Survey on Living With Neurological Conditions in Canada (SLNCC). Logistic regression models were used to identify the characteristics associated with EOD and LOD, and to assess the impact of EOD on overall health and life stress. RESULTS: Compared with LOD, individuals with EOD were more likely to be male, to have a mood disorder, and to have a longer illness duration. EOD was associated with high life stress, but not with negative overall health. DISCUSSION: This study identified attributes associated with EOD that have important implications for service planning.

Making rural and remote communities more age-friendly: experts' perspectives on issues, challenges, and priorities.

With the growing interest worldwide in making communities more age-friendly, it is becoming increasingly important to understand the factors that help or hinder communities in attaining this goal. In this article, we focus on rural and remote communities and present perspectives of 42 experts in the areas of aging, rural and remote issues, and policy who participated in a consensus conference on age-friendly rural and remote communities. Discussions highlighted that strengths in rural and remote communities, such as easy access to local leaders and existing partnerships, can help to further age-friendly goals; however, addressing major challenges, such as lack of infrastructure and limited availability of social and health services, requires regional or national government buy-in and funding opportunities. Age-friendly work in rural and remote communities is, therefore, ideally embedded in larger age-friendly initiatives and supported by regional or national policies, programs, and funding sources.

Lessons learned from a Canadian province-wide age-friendly initiative: the Age-Friendly Manitoba Initiative.

The Age-Friendly Manitoba Initiative was launched in 2008. A formative evaluation we conducted in 2011 with 44 participating rural and urban communities demonstrates considerable progress, with virtually all communities having formed an Age-Friendly Committee and conducting a community assessment to identify priorities for action. The majority of communities implemented one or more age-friendly projects. Major barriers to becoming age-friendly identified by participants included lack of funding; lack of capacity, particularly in small communities; and lack of leadership or direction. The study highlights the importance of strong leadership at all levels of government (municipal, provincial, federal); the need to support communities, particularly rural ones, as they try to become more age-friendly; and the importance of ongoing promotion of age-friendliness locally and more broadly (e.g., provincially).

Filipino Health Care Aides and the Nursing Home Labour Market in Winnipeg.

Canada's nursing homes have become increasingly dependent on immigrant health care aides. More than any other ethnic group, Filipino women are over-represented among health care aides in the Canadian health care system. This qualitative study explored the employment experiences of Filipino health care aides in nursing homes from their own perspectives as well as those of policy stakeholders. Fourteen in-depth interviews were conducted with Filipino health care aides and long-term-care policy stakeholders in Winnipeg, Manitoba. The results indicated that migrant social networks act as pathways linking immigrant women with employment opportunities in nursing homes. The composition of the labour force is also shaped by management strategies and labour market accommodations that respond to, and reinforce, these social networks. These findings have implications for workforce planning and the quality of care provision in nursing homes.