"An animated socialization without substance:" experiences of persons living with dementia through the COVID-19 pandemic.

BACKGROUND: Like so many others, persons living with dementia have been greatly impacted by the COVID-19 pandemic. A Stakeholder Advisory Council set a research priority to learn more about the experiences of families living with dementia during COVID-19. METHODS: This study was conducted using a multi-method design. Online surveys were completed by 27 persons living with dementia to rate the impact of COVID-19 on their health and healthcare. Additionally, interviews (n = 3) and two focus groups were conducted via Zoom with eight participants to explore the experiences of persons living with dementia during COVID-19. RESULTS: Most participants in this study reported that COVID-19 had some to extreme impact on their anxiety, feelings of isolation, and quality of life. Focus groups and interviews provided context and increased understanding of the main survey findings, with participants also describing other concerns and how they were coping with all of the challenges that came with COVID-19. Five themes from the qualitative data were health, isolation, feelings about COVID-19, adapting to COVID-19, and self-refection. DISCUSSION: Although persons living with dementia described the ways that COVID-19 impacted on their quality of life, they also described strategies for coping. For those persons living with dementia who are able to utilize technology, this study highlights the ongoing need to provide virtual opportunities for socialization and support. These findings also emphasize the need to create safe opportunities for socialization such as small socially distanced activities that may allow persons living with dementia to maintain social connections through the COVID-19 pandemic and throughout the progression of their disease.

"A Different Way to Survive": The Experiences of Family Caregivers of Persons Living With Dementia During the COVID-19 Pandemic.

Family caregivers of persons living with dementia often experience challenges to their health and quality of life related to their caregiving role. The COVID-19 pandemic added substantially to the responsibilities of family caregivers, potentially putting them at greater risk of poor health outcomes and impeded quality of life. To better understand the impact of the pandemic on the experiences of family caregivers, a multimethods study was conducted. Family caregivers of persons living with dementia were invited to complete a cross-sectional survey and a subset of survey respondents were invited to participate in focus groups for added insight. A total of 161 caregivers responded to the survey and 30 participated in the focus groups. Qualitative data from focus groups were used to elucidate deeper insight into quantitative findings from the survey. Findings reflect that the pandemic affected family caregiver health and wellness, access of care and resources, identity, and resilience.

A Multiple Stakeholder Perspective on the Impact of COVID-19 on Dementia Care.

The aim of this study was to describe the impact of the COVID-19 pandemic on dementia care from a multiple stakeholder perspective. We used a multi-method design, with a cross-sectional survey followed by focus groups/interviews. Surveys were completed by people living with dementia (n = 27), family caregivers (n = 161), and health and social care professionals (n = 77). A sub-sample (n = 55) participated in an interview or one of 9 focus groups. Surveys were analyzed with descriptive statistics and focus group/interview data were analyzed using a thematic approach. Participants reported an impact of COVID-19 on dementia care, including less access to care and resources for care. Telehealth and tele-support/education were reported to be effective alternatives to support care. Themes from the qualitative data about dementia care were: (1) planning and providing care, (2) making choices around risk and safety, (3) experiences of loss, and (4) technology and dementia care. The results of this study present opportunities to improve the quality of care through addressing inequities and identifying improved and innovative approaches to address social isolation and virtual care for this vulnerable population.

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.