Dementia-friendly initiatives within the context of COVID-19 pandemic: Challenges and strategies perceived by service professional stakeholders from the USA and China

Abstract

Purposes Dementia-friendly initiatives (DFI) are community-based movements aimed to address stigma, exclusion, and discrimination associated with dementia. This study examined the challenges faced and strategies used by DFI prior to and during the COVID-19 pandemic from the perspectives of stakeholders in the USA and China. Methods Qualitative interviews with 17 stakeholders involved in DFI from the United States and mainland China were conducted via the Zoom platform. Semi-structured interview questions focused on DFI challenges and strategies prior to and during the pandemic. Thematic analysis was used to analyze the data. Results Three major challenges prior to the COVID-19 pandemic included low participation of persons with dementia, difficulties in building community collaborations, and limited funding and resources needed to sustain DFI. During the COVID-19 pandemic, challenges included exacerbated difficulties of involving persons with dementia and reduced policy support for DFI. Strategies implemented prior to COVID-19 included partnerships with community organizations to outreach and engage persons with dementia, and coordination of resources and diversification of funding sources to sustain DFI. Strategies during the COVID-19 pandemic centered on the implementation of person-centered technology to support persons with dementia and family caregivers, and the development of new programs that integrated efforts to address the impact of COVID-19. Implications DFI in the USA and mainland China shared similar challenges for DFI prior to and during COVID-19. During the COVID-19 pandemic, DFI in both countries showed resourcefulness through reliance on technology, community collaboration, and COVID-19–related resources to provide support and services. While it remains critical to advocate to the central government to fund DFI, DFI in both societies need to be open to other funding sources, hire persons with dementia as key staff members of DFI, and demonstrate its effectiveness through rigorous evaluation.

Variation in Implementing Dementia-Friendly Community Initiatives: Advancing Theory for Social Change

“…While the majority are defined by their geographical location, some are ‘Communities of Interest’ organized around shared identities, interests and places” [ 31 ]. In addition, Sun and colleagues, (2022)—the only other study we know of that has used formal research methods to understand the experiences of DFC initiative leaders in the United States—also found that financial capital (e.g., dedicated funding for DFC initiative efforts), social capital (e.g., multisectoral partnerships), and human capital (e.g., leadership and staff time) influenced the scope of DFC work during the COVID-19 pandemic [ 18 ].…”

“…Alzheimer’s Disease International—an organization that connects more than 100 dementia-focused associations across the world [ 14 ]—defines DFCs as “a place or culture in which people with dementia and their care partners are empowered, supported and included in society, understand their rights, and recognize their full potential” [ 15 ]. Guided by prior discourse [ 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 ], we conceptualize DFC initiatives as systematic efforts to make communities more inclusive of persons living with a diversity of cognitive abilities as they age; DFC initiatives further strive to make communities more supportive of PLWD and their care partners by facilitating the collaboration and contributions of community leaders across sectors, including PLWD.…”

“…There is only one study in the United States, to our knowledge, that has utilized formal research methods to investigate DFC initiatives. Sun and colleagues (2022) conducted semi-structured interviews with 17 stakeholders involved in DFC initiatives in the United States and China to understand challenges and strategies during the COVID-19 pandemic [ 18 ]. Challenges encompassed difficulties involving PLWD due to social distancing protocols and limited policy supports for DFC initiative work.…”

“…Challenges encompassed difficulties involving PLWD due to social distancing protocols and limited policy supports for DFC initiative work. Strategies included drawing on partnerships with local government and foundations to fund the initiatives, as well as utilizing Zoom technology to engage PLWD and their care partners [ 18 ]. The authors recommend future directions for DFC initiative practices, including advocating for public funds to support DFC work and hiring PLWD to lead DFC initiatives.…”

“…We also aim to explore what contextual factors influence variation in implementation. Prior scholarship has begun to identify conditions that contribute to the start-up and maintenance of DFC initiatives, such as funding sources, multisectoral partnerships, and leadership [ 18 , 19 ]. Our study aims to advance this area of knowledge by exploring how organizational and community contexts potentially lead to different approaches for the implementation of DFC initiatives.…”