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.

Person-centered care for family caregivers of people living with dementia: Co-designing an education program for the healthcare workforce.

BACKGROUND: Recent research recommends the healthcare workforce receive competency-based education to identify, assess, support and partner with family-caregivers [FCGs} across the care trajectory.[1 2] Although the risk of FCG anxiety, burden, and loneliness to FCG's wellbeing is widely documented, typically education has been targeted towards FCG's to increase their care skills rather to educate healthcare providers to support FCG's caregiving and wellbeing.[3] OBJECTIVES: We will present the co-design process used to create a competency-based education program for the healthcare workforce that ensures a person-centered focus on FCGs and introduce our Health Workforce Caregiver-Centered Care Education focused on dementia. Co-design is the act of creating with stakeholders to ensure the results meet their needs and are usable. PROJECT DESCRIPTION: We began by coining the concept "caregiver-centered care," defining it as: a collaborative working relationship between families and healthcare providers aimed at supporting FCGs in their caregiving role, decisions about services, care management, and advocacy [4 5] . From this definition, and working with multi-level interdisciplinary stakeholders we designed[6] and validated[7] a Caregiver-Centered Care Competency Framework in a Modified Delphi Process. Stakeholders (n= 101) including FCGs, health providers, policy makers, community organizations, research team, script writer, and educational designers then used effective practices for dementia education for the health workforce [8-11] to co-design the first or 'foundational' level of a Caregiver Centered Care education program. RESULTS: Teaching and learning resources include six competency-aligned educational modules with videos and interactive exercises that encourage reflection. With the COVID-19 pandemic, we moved the education online (caregivercare.ca). In the first two months online, November 9, 2020-January 9, 2021, 352 healthcare providers completed the education. To date, learners' qualitative evaluations have been positive, "Very good information for professionals working with caregivers; especially relevant to homecare, geriatricians, allied health, and others working within the Seniors' Health realm. Engaging format that really evokes empathy for caregivers." DISCUSSION: We continue to use mixed methods to evaluate the Caregiver-Centered Care Education, for acceptability and effectiveness, in five care contexts (primary, acute, home, supportive living, long-term care). CONCLUSION: We expect that our education will support caregiver-centered care in all settings providing dementia-related care.

Neglected Needs of Family Caregivers during the COVID-19 Pandemic and What They Need Now: A Qualitative Study.

COVID-19 has had a negative impact on family caregivers, whether the care receivers lived with the caregiver, in a separate community home, in supportive living, or in long-term care. This qualitative study examines the points of view of family caregivers who care in diverse settings. Family caregivers were asked to describe what could have been done to support them during the COVID-19 pandemic and to suggest supports they need in the future as the pandemic wanes. Thorne's interpretive qualitative methodology was employed to examine current caregiver concerns. Thirty-two family caregivers participated. Family caregivers thought the under-resourced, continuing care system delayed pandemic planning, and that silos in health and community systems made caregiving more difficult. Family caregivers want their roles to be recognized in policy, and they cite the need for improvements in communication and navigation. The growth in demand for family caregivers and their contributions to the healthcare system make it critical that the family caregiver role be recognized in policy, funding, and practice.

A scoping review of COVID-19 experiences of people living with dementia.

OBJECTIVES: Compared with the general population, people living with dementia have been unequivocally affected by the COVID-19 pandemic. However, there is a paucity of knowledge on the COVID-19 impact on people with dementia and their care partners. The objective of this scoping review was to synthesize the existing literature on the COVID-19 experiences of people with dementia and their care partners. METHODS: Following Arksey and O'Malley's scoping review framework, we searched five electronic databases (Scopus, PubMed, CINAHL, EMBASE, and Web of Science) and an online search engine (Google Scholar). Inclusion criteria consisted of English-language articles focusing on the COVID-19 experiences of people with dementia and their care partners. SYNTHESIS: Twenty-one articles met our inclusion criteria: six letters to the editor, seven commentaries, and eight original research studies. In the literature, five main themes were identified: (i) care partner fatigue and burnout; (ii) lack of access to services and supports; (iii) worsening neuropsychiatric symptoms and cognitive function; (iv) coping with COVID-19; and (v) the need for more evidence-informed research. Factors such as living alone, having advanced dementia, and the length of confinement were found to exacerbate the impact of COVID-19. CONCLUSION: Urgent action is needed to support people living with dementia and their care partners in the pandemic. With little access to supports and services, people with dementia and their care partners are currently at a point of crisis. Collaboration and more evidence-informed research are critical to reducing mortality and supporting people with dementia during the pandemic.

RéSUMé: OBJECTIFS: Comparativement à la population générale, les personnes vivant avec la démence ont incontestablement été touchées par la pandémie de COVID-19. On en sait toutefois peu sur l'effet de la COVID-19 sur les personnes atteintes de démence et leurs partenaires soignants. Notre étude de champ visait à résumer la littérature existante sur l'expérience de la COVID-19 chez les personnes atteintes de démence et leurs partenaires soignants. MéTHODE: En suivant le cadre méthodologique d'Arksey et O'Malley pour les études de champ, nous avons interrogé cinq bases de données électroniques (Scopus, PubMed, CINAHL, EMBASE et Web of Science) et un moteur de recherche en ligne (Google Scholar). Nous avons inclus tous les articles en anglais portant sur l'expérience de la COVID-19 chez les personnes atteintes de démence et leurs partenaires soignants. SYNTHèSE: Vingt et un articles ont correspondu à nos critères d'inclusion : six lettres publiées dans le courrier des lecteurs, sept commentaires et huit études de recherche originales. Cinq grands thèmes sont ressortis de ces articles : i) la fatigue et l'épuisement professionnel des partenaires soignants; ii) le manque d'accès aux services et aux mesures d'aide; iii) l'aggravation des symptômes neuropsychiatriques et des fonctions cognitives; iv) les façons de faire face à la COVID-19; et v) le besoin de plus de recherche fondée sur les preuves. Nous avons constaté que trois facteurs, soit le fait de vivre seul(e), la démence avancée et la durée du confinement, exacerbaient l'effet de la COVID-19. CONCLUSION: Une action urgente est nécessaire pour aider les personnes vivant avec la démence et leurs partenaires soignants durant la pandémie. N'ayant guère accès aux mesures d'aide et aux services, les personnes atteintes de démence et leurs partenaires soignants se trouvent actuellement dans une situation de crise. La collaboration et la recherche fondée sur les preuves sont essentielles pour réduire la mortalité et aider les personnes atteintes de démence durant la pandémie.

Using Twitter to Understand the COVID-19 Experiences of People With Dementia: Infodemiology Study.

BACKGROUND: The COVID-19 pandemic is affecting people with dementia in numerous ways. Nevertheless, there is a paucity of research on the COVID-19 impact on people with dementia and their care partners. OBJECTIVE: Using Twitter, the purpose of this study is to understand the experiences of COVID-19 for people with dementia and their care partners. METHODS: We collected tweets on COVID-19 and dementia using the GetOldTweets application in Python from February 15 to September 7, 2020. Thematic analysis was used to analyze the tweets. RESULTS: From the 5063 tweets analyzed with line-by-line coding, we identified 4 main themes including (1) separation and loss; (2) COVID-19 confusion, despair, and abandonment; (3) stress and exhaustion exacerbation; and (4) unpaid sacrifices by formal care providers. CONCLUSIONS: There is an imminent need for governments to rethink using a one-size-fits-all response to COVID-19 policy and use a collaborative approach to support people with dementia. Collaboration and more evidence-informed research are essential to reducing COVID-19 mortality and improving the quality of life for people with dementia and their care partners.