Plain English summaryThe importance of citizen involvement in healthcare research and planning has been widely recognized. There is however, a lack of understanding of how best to engage older adults, Canada's fastest growing segment of the population and biggest users of the healthcare system. We aimed to address this gap by developing an understanding of the engagement of older adults and their caregivers in healthcare research and planning. We conducted a review of available knowledge on engagement in healthcare research and planning with a focus on older adults and their caregivers. A five stage engagement framework emerged from this study that can be used to guide engagement efforts. We are continuing to collaborate with older adults and decision makers to develop and test strategies based on the presented framework.Abstract Background The importance of engaging the community in healthcare research and planning has been widely recognized. Currently however, there is a limited focus on older adults, Canada’s fastest growing segment of the population and biggest users of the healthcare system. Objective This project aimed to develop an understanding of engagement of older adults and their caregivers in healthcare research and planning. Method A realist synthesis was conducted of the available knowledge on engagement in healthcare research and planning. The search methodology was informed by a framework for realist syntheses following five phases, including consultations with older adults. The synthesis included theoretical frameworks, and both peer-reviewed and grey literature. Results The search generated 15,683 articles, with 562 focusing on healthcare research and planning. The review lead to the development of a framework to engage older adults and their caregivers in healthcare research and planning. The 5 stages environment, plan, establish, build, and transition are accompanied with example context, mechanism, and outcomes to guide the use of this framework. Conclusion We have identified a framework that promotes meaningful engagement of older adults and their caregivers. We are continuing to collaborate with our community partners to further develop and evaluate engagement strategies that align with the presented framework.

BackgroundEngagement in healthcare decision making has been recognized as an important, and often lacking, aspect of care, especially in the care of older adults who are major users of the healthcare system.ObjectiveWe aimed to conduct a review of available knowledge on engagement in healthcare decision making with a focus on older patients and their caregivers.MethodsWe conducted a realist synthesis focusing on strategies for engagement of older patients and their caregivers in healthcare decision making. The synthesis encompassed theoretical frameworks and both peer-reviewed and grey literature. Expert consultations included interviews (n = 2) with academics and group consultations (n = 3) with older adults and their caregivers. Abstracts that reported description, assessment, or evaluation of strategies for engagement of adult patients, families, or caregivers (i.e., that report on actual experiences of engagement) were included.ResultsThe search generated 15,683 articles, 663 of which were pertinent to healthcare decision making. Theoretical and empirical work identified a range of strategies and levels of engagement of older patients and their families in healthcare decision making. The importance of communication emerged as a key recommendation for meaningful engagement among providers and patients and their caregivers. The principles developed in this study should be implemented with consideration of the context in which care is being provided.ConclusionsWe have developed a framework that promotes the engagement of patients and their caregivers as equal partners in healthcare decision making. Future research should implement and test the framework in various clinical settings.Electronic supplementary materialThe online version of this article (doi:10.1007/s40271-016-0168-x) contains supplementary material, which is available to authorized users.

To inform future strategy development in Canada and other jurisdictions, we undertook an Internet search to identify existing national and Canadian provincial dementia strategies and their major themes. Twenty-two dementia strategies were identified through an Internet search, supplemented by hand searches of reference lists of retrieved documents. Thematic analysis identified 17 strategic themes; common themes included improved diagnoses and assessments, increased access to care, and improved education of the healthcare workforce. This review reinforces the importance of a multi-faceted response to dementia and illustrates that, despite variation in needs across populations and geographies, there are many common priorities. The strategic themes identified in this review may provide a useful starting point for the development of new national strategies or, alternatively, as a check to determine if important priority areas have been missed in strategy development.

Background Persons with dementia are likely to require care from various health care providers in multiple care settings, necessitating navigation through an often-fragmented care system. This study aimed to create a better understanding of care transition experiences from the perspectives of persons living with dementia and their caregivers in Ontario, Canada, through the development of a theoretical framework. Methods Constructivist grounded theory guided the study. Seventeen individual caregiver interviews, and 12 dyad interviews including persons with dementia and their caregivers, were recorded and transcribed verbatim. The data were coded using NVivo 10 software; analysis occurred iteratively until saturation was reached. Results A theoretical framework outlining the context, processes, and influencing factors of care transitions was developed and refined. Gaining an in-depth understanding of the complex care transitions of individuals with dementia and their caregivers is an important step in improving the quality of care and life for this population. Conclusion The framework developed in this study provides a focal point for efforts to improve the health care transitions of persons living with dementia.

ABSTRACT We present the development of a regional dementia strategy in Southwestern Ontario, Canada. We worked with stakeholders in a regional health authority to develop a dementia strategy. We conducted interviews with persons with dementia and their care partners (n = 26) and health care administrators and policy makers (n = 33); and administered a priority-setting survey (n = 64). Both participant groups identified provider compassion, professionalism, and care in the early stages of dementia as system strengths. Both groups also highlighted a need for more integration and coordination, a need for more person-centred care, support for care partners, and more flexibility in the provision and receipt of services. The highest-ranked priorities were improving care partner support, improving access to care, and improving system-wide quality. We integrate these strengths, needs, and priorities in a strategic framework, “Whole Person, Whole Journey”. Organizations developing a dementia strategy may use this framework as a springboard for their own work.