Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled Trial.

BACKGROUND: Informal carers play a significant role in supporting people living with dementia; however, carers in rural areas are often isolated, with limited access to support services. Although dementia-friendly communities provide valued support for carers, access to them is limited as they are few and geographically dispersed. OBJECTIVE: This study's aim was to increase support and services for rural informal carers of people living with dementia by using information and communication technologies accessed through an integrated website and mobile app-the Verily Connect app. The objective of this protocol is to detail the research design used in a complex study that was situated in a challenging real-world setting integrating web-based and on-ground technology and communication. Therefore, it is anticipated that this protocol will strengthen the research of others exploring similar complex concepts. METHODS: A stepped-wedge, open-cohort cluster randomized controlled trial was conducted to implement Verily Connect across 12 rural Australian communities. The Verily Connect intervention delivered web-based, curated information about dementia, a localized directory of dementia services and support, group and individual chat forums, and peer support through videoconference. During the implementation phase of 32 weeks, Verily Connect was progressively implemented in four 8-weekly waves of 3 communities per wave. Usual care, used as a comparator, was available to carers throughout the study period. Participants and researchers were unblinded to the intervention. There were 3 cohorts of participants: carers, volunteers, and staff; participants were recruited from their communities. The primary outcome measure was perceived carer social support measured using the Medical Outcomes Study-Social Support Survey. Volunteers and staff provided feedback on their participation in Verily Connect as qualitative data. Qualitative data were collected from all cohorts of participants through interviews and focus groups. Process evaluation data were collected through interviews and memos written by research staff. Data on the costs of implementing Verily Connect were collected by the research team members and evaluated by a health economist. RESULTS: Between August 2018 and September 2019, a total of 113 participants were recruited. There were 37 (32.7%) carers, 39 (34.5%) volunteers, and 37 (32.7%) health service staff. The study was complex because of the involvement of multiple and varied communities of carers, volunteers, health service staff, and research team members originating from 5 universities. Web-based technologies were used as intervention strategies to support carers and facilitate the process of undertaking the study. CONCLUSIONS: The Verily Connect trial enabled the testing and further development of a web-based approach to increasing support for carers of people living with dementia across a diverse rural landscape in Australia. This protocol provides an example of how to conduct a pragmatic evaluation of a complex and co-designed intervention involving multiple stakeholders. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12618001213235; https://tinyurl.com/4rjvrasf. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/33023.

Using Twitter to Examine Stigma Against People With Dementia During COVID-19: Infodemiology Study.

BACKGROUND: During the pandemic, there has been significant social media attention focused on the increased COVID-19 risks and impacts for people with dementia and their care partners. However, these messages can perpetuate misconceptions, false information, and stigma. OBJECTIVE: This study used Twitter data to understand stigma against people with dementia propagated during the COVID-19 pandemic. METHODS: We collected 1743 stigma-related tweets using the GetOldTweets application in Python from February 15 to September 7, 2020. Thematic analysis was used to analyze the tweets. RESULTS: Based on our analysis, 4 main themes were identified: (1) ageism and devaluing the lives of people with dementia, (2) misinformation and false beliefs about dementia and COVID-19, (3) dementia used as an insult for political ridicule, and (4) challenging stigma against dementia. Social media has been used to spread stigma, but it can also be used to challenge negative beliefs, stereotypes, and false information. CONCLUSIONS: Dementia education and awareness campaigns are urgently needed on social media to address COVID-19-related stigma. When stigmatizing discourse on dementia is widely shared and consumed amongst the public, it has public health implications. How we talk about dementia shapes how policymakers, clinicians, and the public value the lives of people with dementia. Stigma perpetuates misinformation, pejorative language, and patronizing attitudes that can lead to discriminatory actions, such as the limited provision of lifesaving supports and health services for people with dementia during the pandemic. COVID-19 policies and public health messages should focus on precautions and preventive measures rather than labeling specific population groups.

A Scoping Review of Care Trajectories across Multiple Settings for Persons with Dementia.

Multiple transitions across care settings can be disruptive for older adults with dementia and their care partners, and can lead to fragmented care with adverse outcomes. This scoping review was conducted to identify and classify care trajectories across multiple settings for people with dementia, and to understand the prevalence of multiple transitions and associated factors at the individual and organizational levels. Searches of three databases, limited to peer-reviewed studies published between 2007 and 2017, provided 33 articles for inclusion. We identified 26 distinct care trajectories. Common trajectories involved hospital readmission or discharge from hospital to long-term care. Factors associated with transitions were identified mainly at the level of demographic and medical characteristics. Findings suggest a need for investing in stronger community-based systems of care that may reduce transitions. Further research is recommended to address knowledge gaps about complex and longitudinal care trajectories and trajectories experienced by sub-populations of people living with dementia.

Factors influencing sustainability and scale-up of rural primary healthcare memory clinics: perspectives of clinic team members.

BACKGROUND: The aging of rural populations contributes to growing numbers of people with dementia in rural areas. Despite the key role of primary healthcare in rural settings there is limited research on effective models for dementia care, or evidence on sustaining and scaling them. The purpose of this study was to identify factors influencing sustainability and scale-up of rural primary care based memory clinics from the perspective of healthcare providers involved in their design and delivery. METHODS: Participants were members of four interdisciplinary rural memory clinic teams in the Canadian province of Saskatchewan. A qualitative cross-sectional and retrospective study design was conducted. Data were collected via 6 focus groups (n = 40) and 16 workgroup meetings held with teams over 1 year post-implementation (n = 100). An inductive thematic analysis was used to identify themes. RESULTS: Eleven themes were identified (five that influenced both sustainability and scale-up, three related to sustainability, and three related to scale-up), encompassing team, organizational, and intervention-based factors. Factors that influenced both sustainability and scale-up were positive outcomes for patients and families, access to well-developed clinic processes and tools, a confident clinic leader-champion, facilitation by local facilitators and the researchers, and organizational and leadership support. Study findings revealed the importance of particular factors in the rural context, including facilitation to support team activities, a proven ready-to-use model, continuity of team members, and mentoring. CONCLUSIONS: Interdisciplinary models of dementia care are feasible in rural settings if the right conditions and supports are maintained. Team-based factors were key to sustaining and scaling the innovation.