Identifying Primary Care Models of Dementia Care that Improve Quality of Life for People Living with Dementia and their Care Partners: An Environmental Scan.

Dementia is a growing concern in Canada, affecting peoples' health and raising the cost of care. Between June and October 2019, we conducted an environmental scan to identify primary care models, strategies, and resources for dementia care from 11 pre-selected countries and assess their impact on quality-of-life measures. Search strategies included a rapid scoping review, grey literature search, and discussions with stakeholders. Eighteen primary care-based models of dementia care were identified. Common factors include team-based care, centralized care/case coordination, individual treatment plans, a stepped-care approach, and support for care partners. Five provinces had released a dementia strategy. Evidence of positive outcomes supported primary care-based models for dementia care, although only one model demonstrated evidence of impact on quality of life. Although these findings are encouraging, further research is needed to identify primary care-based models of dementia care that demonstrably improve quality of life for people living with dementia and their care partners.

Optimizing the integration of family caregivers in the delivery of person-centered care: evaluation of an educational program for the healthcare workforce.

BACKGROUND: While family caregivers provide 70-90% of care for people living in the community and assist with 10-30% of the care in congregate living, most healthcare providers do not meaningfully involve family caregivers as partners in care. Recent research recommends that the healthcare workforce receive competency-based education to identify, assess, support, and partner with family caregivers across the care trajectory. OBJECTIVE: This paper reports a mixed-methods evaluation of a person-centered competency-based education program on Caregiver-Centered Care for the healthcare workforce. METHODS: This foundational education was designed for all healthcare providers and trainees who work with family caregivers and is offered free online (caregivercare.ca). Healthcare providers from five healthcare settings (primary, acute, home, supportive living, long-term care) and trainees in medicine, nursing, and allied health were recruited via email and social media. We used the Kirkpatrick-Barr health workforce training evaluation framework to evaluate the education program, measuring various healthcare providers' learner satisfaction with the content (Level 1), pre-post changes in knowledge and confidence when working with family caregivers (Level 2), and changes in behaviors in practice (Level 3). RESULTS: Participants were primarily healthcare employees (68.9%) and trainees (21.7%) and represented 5 healthcare settings. Evaluation of the first 161 learners completing the program indicated that on a 5-point Likert scale, the majority were satisfied with the overall quality of the education (Mean(M) = 4.69; SD = .60). Paired T-tests indicated that out of a score of 50, post-education changes in knowledge and confidence to work with family caregivers was significantly higher than pre-education scores (pre M = 38.90, SD = 6.90; post M = 46.60, SD = 4.10; t(150) = - 16.75, p < .0001). Qualitative results derived from open responses echoed the quantitative findings in satisfaction with the education delivery as well as improvements in learners' knowledge and confidence. CONCLUSION: Health workforce education to provide person-centered care to all family caregivers is an innovative approach to addressing the current inconsistent system of supports for family caregivers. The education program evaluated here was effective at increasing self-reported knowledge and confidence to work with family caregivers.

Tailored, Community-Based Programs for People Living With Dementia and Their Family Caregiver.

People living with dementia (PLWD) have voiced a desire to remain in their home environment as long as possible; unfortunately, there is limited integrated person-and family-centered community support. To examine the need for tailored supports for PLWD and their family caregivers (caregiving dyad), a meeting was conducted in Spring 2020. Thirty key provincial stakeholders with diversity in geographic location, employer and/or organization, range of roles, and family representatives participated in the meeting. Stakeholders identified a series of gaps, including: (a) systemic gaps; (b) gaps between communities of practice; (c) underserved populations; (d) program content and delivery gaps; and (e) PLWD and family caregiver support gaps. With input from stakeholders, we highlighted the need for consistent resources for the caregiving dyad that are flexible, timely, and accessible, which are embedded in the community and led by qualified and trained staff. [Journal of Gerontological Nursing, 48(4), 26-32.].

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.

Clinical evaluation and diagnostic yield following evaluation of abnormal pulse detected using Apple Watch.

OBJECTIVE: The study sought to characterize the evaluation of patients who present following detection of an abnormal pulse using Apple Watch. MATERIALS AND METHODS: We conducted a retrospective review of patients evaluated for abnormal pulse detected using Apple Watch over a 4-month period. RESULTS: Among 264 included patients, clinical documentation for 41 (15.5%) explicitly noted an abnormal pulse alert. Preexisting atrial fibrillation was noted in 58 (22.0%). Most commonly performed testing included 12-lead echocardiography (n = 158; 59.8%), Holter monitor (n = 77; 29.2%), and chest x-ray (n = 64; 24.2%). A clinically actionable cardiovascular diagnosis of interest was established in only 30 (11.4%) patients, including 6 of 41 (15%) patients who received an explicit alert. DISCUSSION: False positive screening results may lead to overutilization of healthcare resources. CONCLUSIONS: The Food and Drug Administration and Apple should consider the unintended consequences of widespread screening for asymptomatic ("silent") atrial fibrillation and use of the Apple Watch abnormal pulse detection functionality by populations in whom the device has not been adequately studied.

Functions of SMARCAL1, ZRANB3, and HLTF in maintaining genome stability.

A large number of SNF2 family, DNA and ATP-dependent motor proteins are needed during transcription, DNA replication, and DNA repair to manipulate protein-DNA interactions and change DNA structure. SMARCAL1, ZRANB3, and HLTF are three related members of this family with specialized functions that maintain genome stability during DNA replication. These proteins are recruited to replication forks through protein-protein interactions and bind DNA using both their motor and substrate recognition domains (SRDs). The SRD provides specificity to DNA structures like forks and junctions and confers DNA remodeling activity to the motor domains. Remodeling reactions include fork reversal and branch migration to promote fork stabilization, template switching, and repair. Regulation ensures these powerful activities remain controlled and restricted to damaged replication forks. Inherited mutations in SMARCAL1 cause a severe developmental disorder and mutations in ZRANB3 and HLTF are linked to cancer illustrating the importance of these enzymes in ensuring complete and accurate DNA replication. In this review, we examine how these proteins function, concentrating on their common and unique attributes and regulatory mechanisms.

Analysis of patients ≥65 with predominant cervical spine fractures: Issues of disposition and dysphagia.

BACKGROUND: Cervical spine fractures occur in 2.6% to 4.7% of trauma patients aged 65 years or older. Mortality rates in this population ranges from 19% to 24%. A few studies have specifically looked at dysphagia in elderly patients with cervical spine injury. AIMS: The aim of this study is to evaluate dysphagia, disposition, and mortality in elderly patients with cervical spine injury. SETTINGS AND DESIGN: Retrospective review at an the American College of Surgeons-verified level 1 trauma center. METHODS: Patients 65 years or older with cervical spine fracture, either isolated or in association with other minor injuries were included in the study. Data included demographics, injury details, neurologic deficits, dysphagia evaluation and treatment, hospitalization details, and outcomes. STATISTICAL ANALYSIS: Categorical and continuous data were analyzed using Chi-square analysis and one-way analysis of variance, respectively. RESULTS: Of 136 patients in this study, 2 (1.5%) had a sensory deficit alone, 4 (2.9%) had a motor deficit alone, and 4 (2.9%) had a combined sensory and motor deficit. Nearly one-third of patients (n = 43, 31.6%) underwent formal swallow evaluation, and 4 (2.9%) had a nasogastric tube or Dobhoff tube placed for enteral nutrition, whereas eight others (5.9%) had a gastrostomy tube or percutaneous endoscopic gastrostomy tube placed. Most patients were discharged to a skilled nursing unit (n = 50, 36.8%), or to home or home with home health (n = 48, 35.3%). Seven patients (5.1%) died in the hospital, and eight more (5.9%) were transferred to hospice. CONCLUSION: Cervical spine injury in the elderly patient can lead to significant consequences, including dysphagia and need for skilled nursing care at discharge.

SMARCAL1 and telomeres: Replicating the troublesome ends.

DNA replication is constantly challenged by both endogenous and exogenous sources of replication stress. SMARCAL1, an SNF2 family DNA translocase, functions in the DNA damage response to address these obstacles and promote the completion of replication. Most studies examining the function of SMARCAL1 and related enzymes have relied on the addition of exogenous genotoxic agents, but SMARCAL1 is needed even in the absence of these drugs to maintain genome stability during DNA replication. We recently determined that SMARCAL1 functions to limit DNA damage during replication of difficult-to-replicate telomere sequences. SMARCAL1-deficient cells display several markers of telomere instability including extrachromosomal telomere circles and co-localization with DNA damage markers. Furthermore, cells lacking the highly related proteins ZRANB3 and HLTF do not exhibit similar problems suggesting a unique function for SMARCAL1. These studies identified the first source of endogenous replication stress that SMARCAL1 resolves and provide insight into the mechanism of SMARCAL1 function in maintaining genome stability.

SMARCAL1 maintains telomere integrity during DNA replication.

The SMARCAL1 (SWI/SNF related, matrix-associated, actin-dependent, regulator of chromatin, subfamily A-like 1) DNA translocase is one of several related enzymes, including ZRANB3 (zinc finger, RAN-binding domain containing 3) and HLTF (helicase-like transcription factor), that are recruited to stalled replication forks to promote repair and restart replication. These enzymes can perform similar biochemical reactions such as fork reversal; however, genetic studies indicate they must have unique cellular activities. Here, we present data showing that SMARCAL1 has an important function at telomeres, which present an endogenous source of replication stress. SMARCAL1-deficient cells accumulate telomere-associated DNA damage and have greatly elevated levels of extrachromosomal telomere DNA (C-circles). Although these telomere phenotypes are often found in tumor cells using the alternative lengthening of telomeres (ALT) pathway for telomere elongation, SMARCAL1 deficiency does not yield other ALT phenotypes such as elevated telomere recombination. The activity of SMARCAL1 at telomeres can be separated from its genome-maintenance activity in bulk chromosomal replication because it does not require interaction with replication protein A. Finally, this telomere-maintenance function is not shared by ZRANB3 or HLTF. Our results provide the first identification, to our knowledge, of an endogenous source of replication stress that requires SMARCAL1 for resolution and define differences between members of this class of replication fork-repair enzymes.

An audit of the use of the Barthel Index in palliative care.

The Barthel Index (Mahoney and Barthel, 1965) is an objective tool which assesses an individual's ability to perform activities of daily living; for example, personal care, mobility, transfers, bathing and feeding. The purpose of this study was to investigate whether the Index could be used with patients with life-threatening illnesses who are admitted to the inpatient intermediate care unit, to aid clinical practice, establish patients' current level of function, and highlight any progress or deterioration in abilities. The overall aim was to facilitate discharge planning and ensure that patients were managed in their preferred place of care. This was a clearly defined group of patients in a specific clinical area. The authors recognise that to improve consistency of findings, the study may need to be applied to a larger cohort of patients with a greater research emphasis. The article presents the results of an audit of 50 patients. The findings suggest that those patients with a low Barthel score on admission, or those with a score dropping by ten or more per week, are significant predictors of a short prognosis. It concludes that the Barthel Index would be a useful tool in the community to prevent inappropriate admission for those with a low score where the patient wishes to die at home. It could also be used as a monitoring tool to help discharge planning and fast-tracking to the preferred place of care in inpatient settings, and may also assist in community health care (CHC) planning.