Dementia Caregiver Experiences: Insights From a Telephone-Based Support Program.

Dementia caregivers face daunting challenges as both the oldest subpopulation of those providing unpaid care and the most at risk of adverse health outcomes as a result of their role, including depression, anxiety, and increased mortality. To better understand the experiences and needs of dementia caregivers, a qualitative content analysis was conducted of secondary data extracted from call logs (N = 569) recorded by a provider-initiated, telephone-based support program. Experiences identified from the call logs were coded, categorized, and ranked to determine the most prevalent dementia caregiving-related experiences. Features of the program, particularly the semi-structured call format and directionality of calls, helped to uniquely capture common experiences of family caregivers and their day-to-day concerns. Findings from this analysis reflect the high prevalence of caregiver mental and emotional health-related concerns. This analysis supports the development of interventions that align with the experiences of dementia caregivers.

Family caregivers' perceptions and experiences of participating in the learning skills together intervention to build self-efficacy for providing complex care.

The purpose of this study was to describe how an intervention to teach family caregivers of persons living with dementia to provide complex care tasks contributes to their self-efficacy. This qualitative study was embedded in a pilot study evaluating the intervention. Semi-structured interviews were conducted with 15 caregivers who had completed the intervention. Content analysis was used to analyze the data. Themes identified from the interviews were: "helpfulness of the content", "if they can do it, so can I", and "applying what I have learned". Caregivers described the helpfulness of learning from expert healthcare professionals in a supportive environment. They valued the group setting, including interacting with and learning from their peers. Caregivers demonstrated mastery of the content by applying it to their caregiving situations and sharing information with other family members. These findings provide insights into successful elements in a complex care intervention that contributed to building caregiver self-efficacy.

Engagement with a diverse Stakeholder Advisory Council for research in dementia care.

BACKGROUND: The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process. METHODS: To evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC. RESULTS: Interviews (N = 11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n = 2); family care partners (n = 4), and health and social care professionals in dementia care (n = 5). Ten themes were categorized into four overarching domains: accessibility, council infrastructure, values and environment, and benefits of involvement. CONCLUSIONS: Findings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.

Involving stakeholders in research about dementia care is recognized as an important approach to develop findings that are relevant to individuals living with dementia, family care partners, and health and social professionals in dementia care. Still, this approach is not often used and there is a need for more information about how researchers can engage stakeholders in the research process and the impact of engagement from the perspectives of stakeholders. In this paper, we describe how a mixed group of stakeholders was engaged for a project to identify priorities for dementia care research and their perspectives of the experience.A Stakeholder Advisory Council (SAC) worked together to develop their skills in research and connected with their communities to determine what is most important to be studied in the field of dementia care research. To understand the perspectives of the stakeholders involved in this project, we conducted individual interviews with members of the SAC.This study will help researchers understand how they can collaborate with stakeholders in dementia care and the benefits of including individuals living with dementia, family care partners, and professional stakeholders in the research process.

Engaging multi-stakeholder perspectives to identify dementia care research priorities.

OBJECTIVES: The purpose of this study was to partner with stakeholders to identify gaps in care for persons living with dementia and their family caregivers and from this list, identify priorities for dementia care research. METHODS: Using a community-engaged research approach, a Stakeholder Advisory Council (SAC) consisting of diverse membership including persons living with dementia and family caregivers was convened. Through our work with the SAC, along with input from the wider network through a symposium, webinars, and an online learning community, gaps in dementia care and a list of topics for dementia care research was generated. This list was reduced to 46 topics for dementia care research and sent to stakeholders (persons living with dementia, family caregivers, and health/social care professionals in dementia care) to be prioritized by rating each of the 46 topics as "Not so important," "Important," or "Very important." Priorities for dementia care were summarized by frequencies and proportions. RESULTS: A total of 186 participants completed the survey from August through October 2020, including 23 (12.4%) persons living with dementia, 101 (54.3%) family caregivers, and 62 (33.3%) health/social care professionals. Consistent across stakeholder groups was the focus on research on how best to support families following a diagnosis of dementia. Among persons living with dementia, research focused on support for continuing to live in their own homes was ranked as the highest priority, rated by 91.3% as "Very Important". High priority research areas for family caregivers included interventions to slow cognitive decline (76.3%) as well as non-pharmacological approaches to manage behavioral symptoms (74.7%). The highest priority research topics for health/social care professionals were focused on the diagnosis including benefits of an early diagnosis (71.4%), how best to deliver the diagnosis (70.9%), and supports needed following a diagnosis (78.6%). CONCLUSIONS: This project draws on the strengths of its multi-stakeholder perspective to support patient-centered outcomes research. Findings are intended to inform those who conduct research and those who fund research about which research topics stakeholders believe are most important and thus have greatest potential to improve the quality of life among people living with dementia and their families.