Past Disparities in Advance Care Planning Across Sociodemographic Characteristics and Cognition Levels in the United States.

We aimed to examine past advance care planning (ACP) in U.S. older adults across different sociodemographic characteristics and cognition levels. We established the baseline trends from 10 years ago to assess if trends in 2024 have improved upon future data availability. We considered two legal documents in the Health and Retirement Study 2014 survey as measures for ACP: a living will and durable power of attorney for healthcare (DPOAH). Logistic regression models were fitted with outcome variables (living will, DPOAH, and both) stratified by cognition levels (dementia/impaired cognition versus normal cognition). Predictor variables included age, gender, ethnicity, race, education, marital status, rurality, everyday discrimination, social support, and loneliness. Age, ethnicity, race, education, and rurality were significant predictors of ACP (having a living will, DPOAH, and both the living will and DPOAH) across cognition levels. Participants who were younger, Hispanic, Black, had lower levels of education, or resided in rural areas were less likely to complete ACP. Examining ACP and its linkages to specific social determinants is essential to understanding disparities and educational strategies needed to facilitate ACP uptake among different population groups. Accordingly, this study aimed to examine past ACP disparities in relation to specific social determinants of health and different cognition levels. Future studies are required to evaluate whether existing disparities have improved over the last 10 years when 2024 data is released. Addressing ACP disparities among diverse populations, including racial and ethnic minorities with reduced cognition levels, is crucial for enhancing health equity and access to care.

Understanding stigma of dementia during COVID-19: a scoping review.

Introduction: Stigma of dementia is one of the greatest challenges for people living with dementia. However, there is little research on the different types of stigma of dementia in the COVID-19 pandemic. The purpose of this scoping review is to synthesize the existing literature on dementia-related stigma (self, public, and structural stigma), during the pandemic. Methods: Guided by Arksey and O'Malley's scoping review framework and PRISMA guidelines, CINAHL, EMBASE, Google Scholar, Medline, PsycINFO, and Web of Science were searched for English language literature from January 2020 to June 2023. Inclusion criteria consisted of peer-reviewed, original research articles addressing stigma of dementia during the COVID-19 pandemic. Thematic analysis was used to analyze the data and steps were taken to ensure rigor. Results: Fifteen articles met our inclusion criteria. Four primary themes were identified including: 1) COVID-19 stereotypes and assumptions of dementia; 2) human rights issues and deprived dignity; 3) disparate access to health services and supports; and 4) cultural inequities and distrust. Discussion: The COVID-19 pandemic has contributed to the stigmatization of people living with dementia. Further research is needed to develop, implement, and evaluate interventions targeted towards the different types of dementia-related stigma (including self, public, and structural stigma). Moreover, our findings highlight the need for more collaborative research that prioritizes the lived experience and input of diverse people living with dementia. Research partnerships with diverse people living with dementia are vital to improving future pandemic planning. Only through evidence-informed research and lived experience can we begin to fully address the different types of dementia-related stigma and enhance the quality of life of people living with dementia.

Shared Activities as a Protective Factor Against Behavioral and Psychological Symptoms of Dementia and Caregiver Stress.

Background and Objectives: Most persons with dementia experience behavioral and psychological symptoms (BPSD). While there is evidence that structured activity programs can be beneficial for persons with dementia and their caregivers, it is not well understood how joint engagement in shared activities affects BPSD and caregiver stress. The purpose of this study was to examine the moderating effect of doing a shared activity on the BPSD and caregiver stress. Research Design and Methods: This study used an intensive longitudinal observational design in which caregivers completed baseline and once-a-day diary surveys for 21 days. Caregivers were asked whether they did a pleasant noncare activity with their relative, the presence of 8 BPSD, and their stress level. A moderation model in a structural equation model examined the relationship between these variables. Results: Our sample consisted of 453 caregivers (87.4% female, 51.4% non-Hispanic White, mean age 53 years [standard deviation {SD}: 14]) and person living with dementia whose mean age was 79 years (SD: 9). On days when the caregivers engaged in a shared activity together with person living with dementia, there was a significant decrease in the BPSD (estimate -0.038, standard error [SE] = 0.016, 95% confidence interval [CI]: -0.069, -0.007, p value = 0.018). The effects of engaging in a shared activity decreased the impact of caregiver stress by 0.052 (estimate -0.052, SE = 0.018, 95% CI: -0.087, -0.017, p value = 0.004). At the between-person level, no differences were found in BPSD across caregivers who engaged or did not engage in shared activities. Discussion and Implications: The results of our study indicate that doing a shared activity is associated with reduced BPSD among persons with dementia and may buffer the impact of caregiver stress on BPSD. Shared activities should be considered a key intervention component for dementia caregivers.

Advancing Gerontology through Exceptional Scholarship (AGES): a Mentorship Initiative for Early Career Faculty.

Mentorship is critical to supporting professional development and growth of new and emerging faculty members. Working with the Gerontological Society of America (GSA), we created the Advancing Gerontology through Exceptional Scholarship (AGES) Initiative as a mentorship model to promote productivity and peer support for new and early career faculty members. In this commentary, we highlight the AGES Program as a prototype to facilitate peer support, collective learning, and co-authorship opportunities to advance new and early career faculty members, especially in the field of aging. Moreover, we identify four crucial strategies that cultivated and refined our AGES Program including: i) ensuring flexibility to address mentee needs; ii) establishing check-ins and accountability to enhance productivity; iii) fostering peer support and collective learning; and iv) delivering motivational and educational activities. Drawing on our experience with the AGES Program, this commentary provides recommendations to support other groups looking to develop high-quality mentorship programs to support new and early career faculty members in academia.

Using Twitter to Understand COVID-19 Vaccine-Related Ageism During the Pandemic.

BACKGROUND AND OBJECTIVES: During the rollout of coronavirus 2019 (COVID-19) vaccines, older adults in high-income countries were often prioritized for inoculation in efforts to reduce COVID-19-related mortality. However, this prioritization may have contributed to intergenerational tensions and ageism, particularly with the limited supply of COVID-19 vaccines. This study examines Twitter discourse to understand vaccine-related ageism during the COVID-19 pandemic to inform future vaccination policies and practices to reduce ageism. RESEARCH DESIGN AND METHODS: We collected 1,369 relevant tweets on Twitter using the Twint application in Python from December 8, 2020, to December 31, 2021. Tweets were analyzed using thematic analysis, and steps were taken to ensure rigor. RESULTS: Our research identified four main themes including (a) blame and hostility: "It's all their fault"; (b) incompetence and misinformation: "clueless boomer"; (c) ageist political slander; and (d) combatting ageism: advocacy and accessibility. DISCUSSION AND IMPLICATIONS: Our findings exposed issues of victim-blaming, hate speech, pejorative content, and ageist political slander that is deepening the divide of intergenerational conflict. Although a subset of tweets countered negative outcomes and demonstrated intergenerational solidarity, our findings suggest that ageism may have contributed to COVID-19 vaccine hesitancy among older adults. Consequently, urgent action is needed to counter vaccine misinformation, prohibit aggressive messaging, and promote intergenerational unity during the COVID-19 pandemic and beyond.

Advance care planning and outpatient visits among older adults across cognitive levels.

Advance care planning (ACP) can help reduce end-of-life care challenges for persons with Alzheimer's disease and related dementia and their care partners. Building on our previous work, we examined the impact of ACP on outpatient/doctor visits in older adults with dementia/impaired cognition and normal cognition. Using datasets from the 2014 Health and Retirement Study (HRS), we conducted a cross-sectional study of 17,698 participants aged 51 years and older. Our analyses included survey descriptive and logistic regression procedures. Our findings indicated that having at least one ACP measure was significantly associated with a higher mean number of outpatient visits in both cognition groups. Based on our findings, we recommend considering healthcare access and use as an intervening variable in future ACP research.

Healthcare Utilization and Advance Care Planning among Older Adults Across Cognitive Levels.

This study examined the impact of advance care planning (ACP) on healthcare utilization among older adults with normal cognition and impaired cognition/dementia. Using datasets from the Health and Retirement Study, we conducted a cross-sectional study on 17,698 participants aged 51 years and older. Our analyses included survey descriptive and logistic regression procedures. ACP measures included a living will and durable power of attorney for healthcare. Healthcare utilization was measured using the days spent in hospitals, hospice care, nursing homes, and home care. Of the participants, 77.8% had normal cognition, and 22% had impaired cognition/dementia. The proportion of impaired cognition/dementia was higher among racially minoritized participants, single/widowed participants, and those who lived alone and were less educated. The results showed that having an ACP was associated with longer stays in hospitals, nursing homes, and home healthcare in all participants.

Stigma of dementia during the COVID-19 pandemic: a scoping review protocol.

INTRODUCTION: Dementia-related stigma reduces the quality of life of people living with dementia and their care partners. However, there is a dearth of literature synthesising knowledge on stigma of dementia during the COVID-19 pandemic. This scoping review protocol outlines a methodology that will be used to understand the impact of stigma on people living with dementia during the pandemic. Addressing dementia-related stigma is critical to promoting timely dementia diagnoses and enhancing the quality of life for people living with dementia and their care partners. METHODS AND ANALYSIS: This review will follow the Arksey and O'Malley methodological framework and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews checklist. The review will focus on English-language, peer-reviewed literature published between 13 January 2020 and 30 June 2023. Stigma will be broadly defined according to pre-established components (stereotypes, prejudice and discrimination). We will search six databases including CINAHL, EMBASE, Google Scholar, Medline, PsycINFO and Web of Science. We will also hand-search the reference lists of relevant articles to identify additional manuscripts. Two reviewers will develop the data extraction table, as well as independently conduct the data screening. Any disagreements will be resolved through open discussion between the two researchers, and if necessary, by consulting the full team to achieve consensus. Data synthesis will be conducted using an inductive thematic analysis approach. ETHICS AND DISSEMINATION: This review will be the first to explore the impact of dementia-related stigma during the COVID-19 pandemic. An advisory panel including a person living with dementia and a care partner will be consulted to inform our review's findings and support the data dissemination process. The results of this scoping review will be shared and disseminated through publication in a peer-reviewed journal, presentations at academic conferences, a community workshop and webinars with various stakeholders.

Examining the Impact of COVID-19 on People With Dementia From the Perspective of Family and Friends: Thematic Analysis of Tweets.

BACKGROUND: The COVID-19 pandemic is taking a serious toll on people with dementia. Given the rapidly evolving COVID-19 context, policymakers and practitioners require timely, evidence-informed research to address the changing needs and challenges of people with dementia and their family care partners. OBJECTIVE: Using Twitter data, the objective of this study was to examine the COVID-19 impact on people with dementia from the perspective of their family members and friends. METHODS: Using the Twint application in Python, we collected 6243 relevant tweets over a 15-month time frame. The tweets were divided among 11 coders and analyzed using a 6-step thematic analysis process. RESULTS: Based on our analysis, 3 main themes were identified: (1) frustration and structural inequities (eg, denied dignity and inadequate supports), (2) despair due to loss (eg, isolation, decline, and death), and (3) resiliency, survival, and hope for the future. CONCLUSIONS: As the COVID-19 pandemic persists and new variants emerge, people with dementia and their family care partners are facing complex challenges that require timely interventions. More specifically, tackling COVID-19 challenges requires revisiting pandemic policies and protocols to ensure equitable access to health and support services, recognizing the essential role of family care partners, and providing financial assistance and resources to help support people with dementia in the pandemic. Revaluating COVID-19 policies is critical to mitigating the pandemic's impact on people with dementia and their family care partners.

Improving the health equity and the human rights of Canadians with dementia through a social determinants approach: a call to action in the COVID-19 pandemic.

In 2019, the Canadian Government released a national dementia strategy that identified the need to address the health inequity (e.g., avoidable, unfair, and unjust differences in health outcomes) and improve the human rights of people living with dementia. However, the novel coronavirus disease 2019 (COVID-19) pandemic is having an inequitable impact on people with dementia in terms of mortality and human rights violations. As the new Omicron COVID-19 variant approaches its peak, our commentary highlights the need for urgent action to support people living with dementia and their care partners. More specifically, we argue that reducing COVID-19 inequities requires addressing underlying population-level factors known as the social determinants of health. Health disparities cannot be rectified merely by looking at mortality rates of people with dementia. Thus, we believe that improving the COVID-19 outcomes of people with dementia requires addressing key determinants such as where people live, their social supports, and having equitable access to healthcare services. Drawing on Canadian-based examples, we conclude that COVID-19 policy responses to the pandemic must be informed by evidence-informed research and collaborative partnerships that embrace the lived experience of diverse people living with dementia and their care partners.

RéSUMé: Dans sa stratégie nationale sur la démence publiée en 2019, le gouvernement canadien définissait le besoin de redresser les iniquités en santé (p. ex. les différences évitables, inéquitables et injustes dans les résultats cliniques) et de mieux faire respecter les droits humains des personnes vivant avec la démence. La pandémie de la nouvelle maladie à coronavirus 2019 (COVID-19) touche cependant de façon inéquitable les personnes atteintes de démence sur le plan de la mortalité et des violations des droits humains. À l'heure où le nouveau variant Omicron de la COVID-19 est sur le point d'atteindre son pic, nous faisons valoir qu'il faut appliquer des mesures urgentes pour aider les personnes vivant avec la démence et leurs partenaires soignants. Plus précisément, pour atténuer les effets inégaux de la COVID-19, il faut aborder les facteurs populationnels sous-jacents ­ les déterminants sociaux de la santé. Les disparités de l'état de santé ne peuvent pas être corrigées par la simple observation des taux de mortalité chez les personnes atteintes de démence. Nous croyons donc que pour améliorer les résultats cliniques de la COVID-19 chez ces personnes, il faut aborder les grands déterminants comme leurs milieux de vie, leurs soutiens sociaux et l'équité d'accès aux services de soins de santé. À partir d'exemples canadiens, nous concluons que les interventions stratégiques contre la pandémie de COVID-19 doivent être éclairées par des études fondées sur des données probantes et par des partenariats de collaboration qui tiennent compte du vécu de toutes sortes de personnes vivant avec la démence et de leurs partenaires soignants.

Indigenous-specific cultural safety within health and dementia care: A scoping review of reviews.

Globally, health inequities experienced by Indigenous communities are often described and documented in terms of deficits and disease. However, health disparities are complex and involve numerous underlying issues beyond the social determinants of health. Indigenous Peoples face unique barriers to accessing culturally safe and equitable healthcare, including racism, systemic injustice, and a historical legacy of colonialism. There is a paucity of knowledge on Indigenous-specific cultural safety interventions to support health and dementia care. The objective of this scoping review of reviews was to appraise the existing literature to identify key elements, conceptualizations, and interventions of cultural safety to improve health services and dementia care for Indigenous Peoples. Guided by Indigenous principles of relationality, we conducted a scoping review of reviews published between January 2010 to December 2020. We searched CINAHL, PubMed, Scopus, Web of Science, and Google Scholar. Given the limited literature focusing specifically on Indigenous people with dementia, our inclusion criteria focused broadly on Indigenous cultural safety in healthcare. A collaborative and relational rights-based approach co-led by Indigenous cisgender, Two-Spirit, and non-Indigenous cisgender health care providers was used to re-center Indigenous ways of knowing. A total of seventeen articles met our inclusion criteria. Our review identified a range of cultural safety themes from education initiatives to collaborative partnerships with Indigenous communities. Themes emerged at three levels: person-centered/individual level, health practitioner/student level, and healthcare organizational level. Few reviews described specific interventions, implementation strategies, evaluation methods, or the concept of sex and gender to improve cultural safety in healthcare delivery. Findings from this review can help to inform future research, inspire innovative collaborative methodologies, and enhance cultural safety interventions. In moving forward, there is an urgent need for anti-racism education, self-determination, and authentic partnerships to achieve Indigenous-specific cultural safety inclusive of sex and gender considerations in health and dementia care.

Appraising Indigenous cultural safety within healthcare: Protocol of a scoping review of reviews.

AIM: The objective of this scoping review of reviews will be to synthesize the existing literature to identify key elements, conceptualizations and interventions of cultural safety to improve healthcare for Indigenous Peoples. DESIGN: Eligible studies will include reviews (e.g. scoping reviews, systematic reviews and narrative reviews) focused on Indigenous cultural safety in healthcare. METHODS: Guided by Weber-Pillwax's Indigenous principles of relationality and Arksey and O'Malley's scoping review framework, a review of reviews will be conducted by searching peer-reviewed literature published between January 2010 and December 2020. The database search will include CINAHL, PubMed, Scopus, Web of Science, and Google Scholar. This scoping review protocol was registered with the Joanna Briggs Institute on January 28, 2021. DISCUSSION: There is a paucity of knowledge on existing interventions and implementation strategies to support Indigenous cultural safety within the healthcare system. Improving Indigenous cultural safety in healthcare requires a comprehensive understanding of its core components and the specific interventions. IMPACT: This review will help guide future research and enhance cultural safety interventions for Indigenous Peoples, including Indigenous Peoples with diverse genders and sexualities. The findings from this review will provide critical insight and knowledge to inform cultural safety policies, programs and practices to support healthcare for Indigenous populations.

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.