A stakeholder engagement strategy for an ongoing research program in rural dementia care: Stakeholder and researcher perspectives.

Participatory research approaches have developed in response to the growing emphasis on translation of research evidence into practice. However, there are few published examples of stakeholder engagement strategies, and little guidance specific to larger ongoing research programs or those with a rural focus. This paper describes the evolution, structure, and processes of an annual Rural Dementia Summit launched in 2008 as an engagement strategy for the Rural Dementia Action Research (RaDAR) program and ongoing for more than 10 years; and reports findings from a parallel mixed-methods study that includes stakeholder and researcher perspectives on the Summit's value and impact. Twelve years of stakeholder evaluations were analyzed. Rating scale data were summarized with descriptive statistics; open-ended questions were analyzed using an inductive thematic analysis. A thematic analysis was also used to analyze interviews with RaDAR researchers. Rating scale data showed high stakeholder satisfaction with all aspects of the Summit. Five themes were identified in the qualitative data: hearing diverse perspectives, building connections, collaborating for change, developing research and practice capacity, and leaving recharged. Five themes were identified in the researcher data: impact on development as a researcher, understanding stakeholder needs, informing research design, deepening commitment to rural dementia research, and building a culture of engagement. These findings reflect the key principles and impacts of stakeholder engagement reported in the literature. Additional findings include the value stakeholders place on connecting with stakeholders from diverse backgrounds, how the Summit was revitalizing, and how it developed stakeholder capacity to support change in their communities. Findings indicate that the Summit has developed into a community of practice where people with a common interest come together to learn and collaborate to improve rural dementia care. The Summit's success and sustainability are linked to RaDAR's responsiveness to stakeholder needs, the trust that has been established, and the value that stakeholders and researchers find in their participation.

Rural Caregivers for a Family Member With Dementia: Models of Burden and Distress Differ for Women and Men.

Forecasts of increasing prevalence of dementia in rural settings, coupled with reliance on family caregiver support, indicate that a greater understanding of caregiver distress in these contexts is necessary. The purpose of this study was to examine family caregiver burden and severity of distress on the day that a family member was diagnosed with dementia at a memory clinic that serves a rural population. Participants in this retrospective study were 231 primary family caregivers of a rural community-dwelling person with dementia. On the diagnostic day, women reported more burden and severity of distress than men and spouses reported more severity of distress than adult children. A structural equation model was not supported for the entire sample, but was supported for women caregivers only (n = 161). Caregiver distress related to dementia-specific behaviors explained both global distress and burden. Patients' functional decline was related to caregiver burden.